We see it time and time again in the treatment of cancer. Pharma companies focus so much effort on oncologists. It makes sense – oncologists are their primary target when trying to grow a brand as they are the ones who will prescribe the product. But oncologists prescribe based largely on efficacy, encouraging patients to take products that they believe may provide better results. This translates into hope for the patients – hope for more time with their families, hope for more birthdays and graduations, hope for more tomorrows. But hope is just part of the patient’s journey. Patients have many other thoughts and feelings along the road, some of which they hide and do not share with their physicians. To grow a brand, it’s not enough for pharma to simply focus on the oncologists. It is critical to understand what is happening with patients as well. Not least because as the end users, they may also influence the prescribers, as well as other patients.
Oncologists only hold part of the story to help a brand thrive. Patients can complete the story.
Through our research at THE PLANNING SHOP, we’ve learned that Cancer patients are taught that the most important thing in their life is fighting cancer. They go through hours of doctor visits – oncologists, radiation oncologists, surgeons (sometimes multiple surgeons), and other specialists (cardiologists, pulmonologists, GYN ONCs). They sit in waiting room after waiting room with no one seemingly worried about the toll it takes on them. They spend hours in infusion chairs and on the phone trying to coordinate tests and appointments. They experience many inconveniences and side effects – which they may complain about to a nurse or family member or friend – but they do not often voice these complaints to their oncologist. They frequently hold it all in for fear of complaining too much and being taken off the medication that is providing them with hope for their future. They also live in fear of being labeled as a difficult patient, believing they might not get the most efficacious treatment if they are complaining about side effects.
We’re not saying that patients do not report serious side effects to their healthcare team – of course they do. But do they tell their oncologist how the treatment is really affecting them?
- Do they say that they are so fatigued that they do not go out with friends?
- That they are so self-conscious that someone might notice that they have lost all their body hair and therefore they choose to stay home.
- Do they state that they live in fear that their nails are going to fall out, or that they worry about every ache and pain and what it might mean to them?
- Including thoughts about whether their cancer has returned. Has their cancer progressed? Is it growing?
No. Not always.
Patients keep so many things to themselves. Everything around them tells them they are in a battle that only the strong survive. Therefore, they are afraid to show any weakness. Everyone around them is trying to be helpful by telling them they are strong; they are an inspiration. This is all well-meaning, but it contributes to patients not feeling safe enough to share what they are really going through.
Patients are also acutely aware of what their cancer diagnosis is doing to their loved ones or close friends. When they try to share, the strain and stress they are putting on their loved ones – who are powerless to make things better – is often visibly apparent. The more they share about the difficulties they are experiencing – due to the cancer or due to the associated treatment – the more pain they think they’ll cause. So again, they tend to hold back.
Market research for brand growth
In the context of market research for brand growth, we’ve always been good at talking to physicians to find out how they decide on efficacious care, what the logistics of diagnosis, testing, and treatment look like, and how patients move through the system. But when we ask physicians what patients go through mentally and physically – what patients truly think and feel about the drugs and the treatments – it becomes more difficult to get a clear picture. As pharmaceutical market researchers, when we ask physicians about the side effects of products, we are only getting their side of the story – only part of the story – because patients are holding back lots of the information. And shouldn’t we have the complete story? Shouldn’t oncologists and drug companies have the complete story? We should. They should.
Additional insights for brand narrative
Patient research is absolutely critical to brand success: success for the pharma companies, success for oncologists, but mostly success for patients.
To get a clear and complete story about the challenges of cancer and its treatments, and then use the extra insights for positive brand growth, we need to talk to both patients and caregivers separately during market research, as well as the physicians.
It’s a worthwhile exercise to truly understand the positives and negatives of any medications and treatment plans, and surprisingly, even Stage Four patients are happy to spend an hour or so on the phone sharing what they are experiencing. In fact, for the patients and caregivers, this can be quite a cathartic exercise. In some ways, it is easier to tell a stranger what they have been going through rather than to tell a friend or family member.
Of course, we need to be sensitive to patients and how they are feeling when we design our studies. It is important to be flexible: interviews may need to happen over multiple sessions; patients may need breaks. We also need to think very carefully about what we are asking patients to do. It’s one thing to ask them to tell us about their experiences, it is quite another to ask them to do a series of exercises/activities that are not clearly tied to things that matter to them.
The brand benefits of understanding more
So how can brands benefit from talking to patients when the patients are not their direct target?
It’s simple. Understanding what the patients are really going through can be illuminating.
For example, if the insights show that there is a lack of understanding about treatment plans among patients, brands can improve patient materials to really help patients and support them through treatment. Supporting patients can also result in more treatment success: well-supported patients are more likely to stay on treatment and therefore, benefit from the treatment.
Secondly, if there are two brands with similar efficacy rates, then it would help to know how the brands also affect the mental and physical well-being of patients, as this extra information may have a bearing on which drug a prescriber chooses. Perhaps one of the brands causes higher rates of a side effect, like diarrhea, that can adversely affect a patient’s ability to live their life. When diarrhea is bad, patients are confined to their house, and if they have a choice between two similar products, they will choose the one with less diarrhea. This is useful information for a pharma company as they can then take steps to proactively find ways to reduce the diarrhea and/or help oncologists and patients manage it.
Finally, patient understanding can lead to brands positively repositioning in ways that will resonate better with patients, which then also makes the physician-patient conversations more productive. Discussions with patients may illuminate brand levers that are not apparent simply from talking to oncologists.
Listen to a wider audience
Patient research is critical to brand success. When you next seek insights for your oncology brand, cast your net wider and capture the patients’ stories as well.
About the author – Mary Dominiecki
Mary leads the Oncology Research Group at THE PLANNING SHOP, managing the strategic direction of the team and overseeing all oncology research projects. Her oncology experience has covered virtually every tumor type including solid tumors and hematologic malignancies.
Before joining the Company, Mary worked in the bio-oncology group at National Analysts Worldwide (now Naxion). She has also held various positions serving the pharma industry, including Clinical Publications Lead at AstraZeneca, Medical Director for an oncology-focused medical communications agency, and Senior Medical Writer in several therapeutic areas.
Download the full article here.
By Lucas Daly and Alex Kalmanofsky
By necessity, patients with chronic illness are resilient, with well-established support systems cultivated over time. The arrival of a global pandemic has disrupted these systems almost overnight. Shifting their foundations and revealing why they were erected in the first place. What patients and caregivers need and want is laid bare. Affording us an opportunity to understand what support brands can offer patients not just now, but in the future.
We spoke with 10 patients in the US and UK to hear about their experience of living with illness during COVID-19. We wanted to learn what is going well, discuss their fears and concerns, and understand how this pandemic has helped them identify what additional support might afford them some meaningful assistance in the future. Our qualitative conversations included four patients with relapsed and remitting MS, five stage IV cancer patients, and one moderate Crohn’s patient. All are currently receiving treatment.
When talking with patients, we expected to hear the negative consequences of social distancing, a scaled-back health system, and disrupted supply chains. But true to their resilient nature, patients identified the benefits of their situations. We’ve listed some of these below:
1) The whole world is now at home: Everyone is now living with at least some fear over their health, and while this is difficult, it makes the world of the chronically ill just a bit more normal. Patients, in a strange way, fit in and, in fact, they’re the experts. Can’t go outside and be active whenever you want? Can’t just travel at a whim? Too distracted to concentrate on the usual day-to-day activities? These patients have this skillset in spades.
“We’re all living with massive uncertainty and the unknown all the time. So actually this whole lockdown thing, apart from not being able to see people, isn’t any different. It’s just everybody else now living with uncertainty and the unknown.’ (Cancer patient, UK)
2) They have time to do what matters, specifically be with their families. This pause in time has allowed many to spend time with spouses, children, and parents in a way they have not been afforded before. And it’s not just quantity, but quality. One of our patients was a working mother who reflected that she didn’t need to ‘do all the activities’ at the weekend. For example, go to the zoo or pottery classes. An afternoon in the garden playing was quite enough for the kids, and better for her.
“When I work full time, I feel I must do things for the girls at the weekend. Now I can just be here. At Easter we did an egg hunt in the garden. I’m thinking this is what life should be like” (MS patient, UK)
3) They don’t have to explain themselves: No telling coworkers why they are too tired mid-day to continue a project. No explanation needed why post-treatment illness or exhaustion is keeping them from going to events. With many people working from home, patients can be themselves with no excuses.
Concerns and fears are still strong though
Of course, underneath this surface positivity, fears over COVID-19 are bubbling.
1) Stress is pervasive: There is no way to escape the fear of COVID-19, and their risk status should patients get the virus. With wall-to-wall media coverage and severe changes to daily life, this stress is ever-present. They worry about themselves, their families, the world. They are not able to move as much, eat as nutritiously, find calm. They know this stress worsens their immune systems, and many believe it potentiates physical decline.
“I’m more aware of [COVID] because of I’m getting the battering ram of it on TV constantly. It’s the only thing on the news…and if you don’t watch the news your neighbors are talking about it. For people who have nobody, their anxiety will be through the roof.” (MS patient, UK)
2) Interruption in treatment: Some patients have missed scans and appointments have been rescheduled. Many have concerns about medications being unavailable or delayed. Others say there are reduced services available to them; hotlines have reduced hours and physicians and nurses are overloaded and harder to reach. Even for those who don’t need these services right now, they worry about an emergency, or how long this will go on.
‘If the immunotherapies stop working… my next course of action is inhibitors but the side effects of those are fever and cough. So, they’re not putting people on them now. They’re not starting those. And if I don’t get those then I won’t survive” (Cancer patient, UK)
3) Getting treatment in hospital settings: Four of the patients we spoke with receive infusion therapy and expressed concern about going to a hospital for treatment. Though they are escorted away from any setting where COVID-19 patients are treated, the fear of being close was strong, and something they must overcome.
4) Flare-ups and problems: Many patients worry the side effects of their treatment may appear like COVID-19 symptoms (aches, fevers). Or they may have a flare-up (Crohn’s, MS) that would require medications that could impact their immune systems.
5) Financial concerns: In the US, many of the patients expressed concern over losing their jobs, or spouses losing their jobs, and therefore losing the health insurance that allows them to remain on the drugs they feel are saving their lives. One patient with MS – employed as an essential worker in a call center – said she walks one mile each way to work and back. Usually her family would drive her. But due to the concerns for her health, she is isolating and will not accept the ride. Without the job, she has no health insurance to pay for her medications. Surely an all too common concern right now.
Opportunities for brands to offer meaningful support
For the most part, patients core support systems are still in place. However, during this time of social distancing, patients have a new perspective about living with illness. A perspective which has helped them to identify what they need now and in the future that they’ve never had before. Importantly, patients agree that the brands who supply their medicines can be a welcome source of assistance.
1) Support to reduce the stress: Stress is heightened now but it has always been there. Reflecting on their pre-lockdown lives many patients now realise they could have managed this stress better through diet, meditation, yoga, disease specific support, and a deeper consideration of what they want from work and home life. They are interested in attending the new style of online opportunities including meetings with nutritionists, yoga classes, and disease specific webinars. All patients report that visiting an online portal or website about their medication and attending a brand-sponsored series of active classes would help their overall wellbeing.
“I don’t want to pay 100 bucks a month to go to a gym, but like we have now, exercises online. Free and accessible remotely – that would be useful.” (Cancer patient, US)
“My anxiety is through the roof. And my anxiety about what could happen if I could get [COVID] makes the stress worse. And stress makes my MS worse. … My insurance changed my specialty pharmacy, so I went a week without meds amidst the stress. I realize online yoga is helping, and I’d love to continue in the future. Have yoga designed for someone with MS.” (MS patient, US)
2) Assistance with communications: Some patients have realised that while working from home, they don’t need to explain away being tired or needing a break due to their condition. As they normally would. They said, that in the future, they would benefit from literature or other guidance on explaining their condition to colleagues. So they will not be perceived as lazy or incapable – perhaps even having an information card to hand out.
“The only people who understand my condition right now are HR. Sometimes I’m exhausted and it’s the disease. But I can’t go around explaining to everyone what’s going on. I wish there was a card I could give everyone that says, ‘I’m not lazy, I have Crohn’s!’” (Crohn’s patient, US)
“Not everyone at work knows I have [MS], so they don’t understand why I try really hard not to get stressed. I tell them I am tired, and they say, ‘Yeah I know, I’m tired too’, and I think ‘It’s not the same!’. I don’t say anything. It’s not worth it” (MS patient, UK)
3) Trusted sources of information: Now more than ever, patients are exposed to conflicting information. It can be hard to get a handle on COVID-19 and what it means for their condition. For instance, in the UK there is confusion as to why the government has listed Asthma patients as ‘at risk’ but not an MS patient in a wheelchair. In the immediate term, patients want to understand their relationship to COVID-19. However, the prevalence of conflicting information around coronavirus elucidates the difficulty in knowing which sources to trust in general. Going forward, patients desire a direct relationship with a trusted information source about their brand of medication and their disease. Offering an online chat option with a healthcare professional who knows the drug could help them navigate the world, regardless of a pandemic. For example, should they go on a cruise? Should they be with small children who have runny noses? Questions to the manufacturer can be answered quickly and easily and are not expected to take the place of physician recommendations. Respondents of all ages say they use online resources.
“I want more online communication that I don’t have to search for. That I trust. That I can opt-in for… [I want to learn about] ways to support my immune system, but not stimulate my immune system, to not make the MS worse.” (MS patient, US)
“I’m a big user of Dr. Google. I was a member of a Facebook group – MSUK – however the person who runs it is a bit too anal about things… MS nurses do help with answers to questions, but there is not that much we know about MS still. GPs, as soon as you mention MS, say, go see the MS nurse… but she has a few hundred patients.” (MS patient, UK)
A different world to the one we’ve lived in before
Regardless of what happens over the coming months, or years, it is becoming increasingly clear that the world after the pandemic will be different to where we lived before. When it is all over, the brands that emerge with a greater understanding of who their patients are – and therefore who they are able to provide more meaningful support to – will develop stronger and more beneficial relationships with their patients long-term.
(If you’ve found this article interesting read another in our latest series: Healthcare market insights during a pandemic: relevance and understanding are key)
By Yvette (Wei-Yu) Ke
When it comes to healthcare there are different opinions about patient care East and West, and as market researchers, understanding this is critical. Yvette (Wei-Yu) Ke from THE PLANNING SHOP explains why.
In Changchun, China, a family discovers their Nai Nai (grandmother) has been diagnosed with terminal cancer and seemingly only has a short time to live. Their discussions are instinctive: ‘’If you tell her, will you ruin her good mood?’’. Their conclusions: “Yes”.
The family decide to keep the diagnosis from Nai Nai and instead hastily arrange a wedding for a grandson who has only been in a relationship for a few months. The wedding is pitched as a chance for a family reunion, but in reality, it’s an excuse for a final farewell. Nai Nai is excited, and completely unaware that the benign shadows on her scans are anything but and foretell a fatal end.
Does this sound like a Hollywood drama? It should because it’s the plot for a much-talked-about new Hollywood movie called ‘The Farewell’. However, it’s not just a film as this happens all the time in parts of East Asia, including Japan and Singapore.
For many in the Western world it may come as a surprise that a family could do such a thing, but having grown up in Taiwan, this scenario is neither surprising nor unusual. If I were to knock on my neighbours’ doors back home, it would be easy for me to find a family going through a similar scenario. In fact, it even happened to my family…
Back in 2013, when my grandmother was diagnosed with colorectal cancer at the age of 89, a family meeting was called to discuss what to do next. If we told our grandmother the truth, she would no longer enjoy her twilight years: meeting friends, playing with her grandchildren and celebrating important festivals and events. She’d also become sensitive to how she looked, what she ate or how much she slept. As a family, we knew we had a responsibility to keep her away from these worries, and a duty to carry the burden for her.
As we are very ‘Xiao-Shun’, we decided not to tell her. We agreed to arrange the surgery to remove the malignant tumour in her body, without telling her what the surgery was for.
‘Xiao-Shun’ translates as filial piety – or more simply put respecting your elders and looking after them. Traditionally, there is a lot of pressure and criticism from society if you don’t demonstrate ‘Xiao-Shun’.
Two weeks before the surgery, we took our grandmother to hospital to discuss pre and post care. The surgeon, anaesthetist, radiologist, nutritionist and case manager were all there. When we saw them, the first thing we did was hand over a slip of paper that said, “Our grandmother doesn’t know she has cancer”, just in case any of them leaked our secret. The surgery went ahead.
My grandmother will turn 95 this year and she is particularly proud that amongst her siblings she is the only one who has never had cancer! To this day she still doesn’t know the truth. Maybe this belief is one of the reasons she’s alive and well.
Why am I telling you this story and talking about ‘The Farewell’? Because, as a global healthcare market researcher, I believe it’s important to understand different cultures, and what drives patient care across a variety of societies, nations, traditions and backgrounds. How can we ever understand the needs and drivers for different treatments and pharmaceutical products unless we truly understand the decision-making processes and who makes those decisions?
What are the other differences?
As a Taiwanese living and working in London, I’ve experienced how Western culture puts greater emphasis on the individual, their personal freedom and right to privacy, and how this is different from the Eastern way of collectivism, family focus and harmony.
With family playing a central role in Eastern culture, family-based decision-making happens for all parts of life, not just healthcare and treatment choice. In my grandmother’s case, our family was heavily involved in the decision-making process. From which doctor she needed to see, the need for and type of surgery (minimally invasive or traditional with an implant) and post-surgical care. Despite the fact my grandmother was competent enough to make her own choices, she happily followed our decisions. Especially as there is satisfaction and honour to be had in being protected by the children she spent her entire life taking care of.
Studies suggest 30-50% of cancer patients in China have a diagnosed condition concealed from them and over half of family members consider withholding a cancer diagnosis from the patient. (Footnotes 1-3)
Aside from cultural taboos, insufficient legal framework and a lack of awareness of patient rights, this statistic is fuelled by other socio-demographic factors. Families are often afraid to cope with a patient’s emotional reaction or they may simply be unable to afford recommended treatments.
In China, physicians tend to go along with nondisclosure requests from families to avoid patient conflict and even violence. Several cases exist where doctors have informed patients of their diagnosis, without the family’s permission, and have then been reported or faced legal action.
Violence towards medical staff is also an issue, on average 27 such attacks are reported in each hospital in China every year (with countless others not reported or settled with pay-offs). Violence in China’s healthcare system is another story in itself, but you can begin to understand why physicians are often willing to cooperate in non-disclosure agreements with family members. (Footnote 4)
In Western society it seems inconceivable that patients would not be told this type of information. Occasionally we hear of requests from family members to withhold information from patients – particularly when they become substitute decisionmakers closely involved in patient care. However, patient autonomy is entrenched in Western healthcare systems. This notion triggers several ethical issues and not to mention the legal and civil implications.
This contradiction poses an interesting challenge in truly understanding patient experiences and how we leverage these for global brands and patient support initiatives.
Change is coming
Over the next few decades I expect things in Asia to change. With an increased level of awareness about patient rights in younger generations and new legislation emerging, this culture of non-disclosure will certainly evolve. In January 2019, Taiwan passed the ‘Patient Right to Autonomy Act’, the first country in Asia to introduce this type of law. Many hospitals in Japan also self-regulate that patients should be informed of their diagnosis unless they have agreed otherwise.
There’s also a lot the West can learn from the Asian model. In fact, we’re beginning to see Western systems increasingly adopt the concept of patient and family-centred care. This does not mean patients are deprived of making their own healthcare decisions, but the aim is to promote the importance of family members’ roles in the patient’s healthcare experience, improving patient outcomes and support plus greater satisfaction for healthcare professionals.
One size never fits all
Patient experiences are complicated, subject to constant change and highly dependent on healthcare systems, the services available, culture and society. In healthcare market research we often see US and European-based companies applying a Western centric perspective to the rest of the world. This lack of understanding of some aspects of Eastern culture could lead to research outcomes that do not fit with local practices, which in turn creates gaps when trying to draw one global patient experience.
Eastern countries are now promoting patient-centric care to balance the heavily involved family element, and the West is starting to integrate family decision making and support. It’s interesting because this means differences in patient experiences should become less pronounced over time with a convergence of Eastern and Western values.
For now, though, we must never forget the considerable importance of understanding the impact of differing cultures, customs and traditions when devising and interpreting healthcare market research solutions.
P.S. If you ever meet my grandmother, please don’t tell!
1. ‘Disclosure of cancer diagnosis in China: the incidence, patients’ situation, and different preferences between patients and their family members and related influence factors.’ Yuxiu Liu, Jinhong Yang, Da Huo, Honghua Fan, Yufang Gao. 2018 10: 2173–2181.
2. ‘Is therapeutic non-disclosure still possible? A study on the awareness of cancer diagnosis in China.’ Wang DC, Guo CB, Peng X, Su YJ, Chen F. Support Care Cancer. 2011;19(8):1191–1195.
3. ‘Quality of life in Chinese home-based advanced cancer patients: does awareness of cancer diagnosis matter?’ Fan X, Huang H, Luo Q, Zhou J, Tan G, Yong N. J Palliat Med. 2011;14(10):1104–1108.
4. ‘Under the Knife: Why Chinese patients are turning against their doctors.’ Christopher Beam, The New Yorker, August 18, 2014
About the author
Yvette (Wei-Yu) Ke is a Research Manager within the Quantitative Centre of Excellence at THE PLANNING SHOP She began her pharmaceutical consultancy and market research career in Taiwan where she built up her strong knowledge in Asian markets. Since then she has extended her career in the UK to develop her experiences across global markets.
Download a pdf version of the article here.
During a pandemic, it’s important to continue with healthcare market research to keep sight of the advances the industry needs to make in the prevention and treatment of many other diseases. We still need advances in cancer, cardiology, and rare diseases. We still need to listen to patients who are not only suffering from COVID-19, but who are suffering from diabetes, hemophilia and neurological conditions. We still need to engage with oncologists, hematologists and ophthalmologists. But we need to be mindful how we do this. We need to show relevance when asking people for their time. And we need to show understanding for the unusual situation many doctors and patients are currently finding themselves in because of the pandemic.
We recently wanted to engage with some key opinion leaders (KOLs) from oncology to understand their thoughts about liquid biopsies for the early detection of cancer. We contacted 13 lung cancer thought leaders to ask if they had time to take part in some research. Within a few hours we were pleased that we’d booked research sessions with three respondees.
Whilst COVID-19 is consuming our thoughts, we’re still keen to see where the liquid biopsies landscape is headed. The quick responses from the lung cancer specialists showed us that – despite the pandemic – physicians are also still passionate to take part in the discussions involving future advances for their therapy areas.
Eager to engage
Interestingly, two of the three physicians/KOLs we spoke to said how nice it was to have an ‘ordinary’ research discussion again about their specialist therapy area. This is extraordinary given the circumstances in which these physicians are working: their resources – human and otherwise – are being impacted, even commandeered to help fight the pandemic. One told the harrowing tale of losing seven of his seven-hundred strong medical team to the virus. Still, he wanted to fight on, not just against the virus but against cancer.
Unable to engage
Unsurprisingly, some of the other physicians declined, stating that ordinarily they would like to take part, but they are currently being pulled away from their own therapy areas to help the fight against COVID. This is a situation we understand and respect.
Press ahead with research for future advances, but with compassion
Our conclusion, which we thought worth sharing, is that so long as the topic is relevant, clinical thought leaders want to engage in market research that carries their specific area of scientific endeavour forward. They can see a future after the current pandemic, and so can we.
However, the healthcare system is really pulling together now; there is a single-minded goal to contain the pandemic. We cannot know who will and can engage and who cannot. It is for HCPs to decide if they can spare the time to get involved. Our approach: reach out cautiously, give them time to respond, work to their timetables, and if they don’t reply, don’t chase.
The coronavirus pandemic is here, and 24-7 news coverage reports on the huge impact it’s having on health care providers. As market researchers we wanted to speak to physicians directly to understand the personal impact it is having on them. We also wanted to understand their views about the implications the pandemic will have on patient care, clinical trials and healthcare market research during this unprecedented time. We spoke to physicians in the US and UK working in areas that have had some of the highest numbers of COVID-19 to-date. Because of our place in healthcare, we’ve found it useful to understand physician’s thoughts, feelings and concerns, and we’ve highlighted some of these below. We hope you find these insights useful too.
How is the coronavirus pandemic impacting physicians’ day-to-day roles?
The level of impact varies greatly by specialty and in the US by practice setting (i.e. office vs. hospital), but all physicians have been impacted in some shape or form. At one end of the spectrum, we spoke with an endocrinologist in the US who closed her private practice and is now fielding patient phone calls (without reimbursement since the practice is not set up for telehealth), to a HEM-ONC who is still seeing patients but with a skeleton crew (meaning only her). In the UK, we heard from an oncologist who is shutting down two out of three oncology wards and is moving to a mixed ward consisting of oncology, care of the elderly, diabetes and endocrinology. The oncologist also told us that some of his oncology colleagues will be moving across to NHS Nightingale at London’s Excel Centre, to support the temporary hospital set up for COVID-19 cases. Physicians in both markets are doing what they can to minimise their oncology patients’ potential exposure to the virus as well as their own exposure, to preserve their health for a potentially all-hands-on-deck approach as the surge in COVID-19 cases approaches. In the US, some practices have laid off their administrative support staff, which has caused a lot of sadness and stress for providers.
Physicians who are in the midst of COVID-19 surges noted a few key changes:
(1) Days are longer than usual to cover for an influx in patients, and to cover for colleagues who have become sick;
(2) In the US, hospital-based PCPs are now working more hours within the Emergency Room as hospitalists, pulmonologists and infectious disease specialists have shifted to primarily testing and identifying COVID-19 cases.
(3) In the UK, PCPs are turning away all non-essential patients from the GP practice and fear a significant backlog of patients and buildup of undiagnosed conditions.
(4) Finally, across both markets some physicians are experiencing a new fear that they haven’t felt before: getting the disease they are treating patients for themselves, spreading the virus onto loved ones or seeing colleagues become sick.
Some specific comments from physicians:
“Preparing to care for very ill COVID-19 patients, it’s a bit of a draft. My transplant patients can be very ill, but I can’t bring their illness home to my family.”
– Academic Hem-Onc, Philadelphia, US
“We have stopped all procedures and only see patients with heart attacks or at risk of cardiac death. Therefore, half of the patients I’ve see today are COVID-19 patients. It isn’t my field but I’m trying to learn from my colleagues how to diagnose and treat these patients.”
– Cardiologist, Sheffield, UK
What does this mean for patient care and clinical trials?
Patient well-being is still the focus of HCPs, however they are having to change their approach to care. Oncology practices are still seeing patients who are undergoing active treatment (chemo suites are still up and running), but routine monitoring such as blood counts and regular follow up appointments have been paused or converted to telehealth. In the UK, oncology is taking this a little further where oncologists are making very hard decisions and will only treat patients where there is curative intent; the vast majority are otherwise having treatment delayed or even stopped. Physicians hope this will only be for 4-6 weeks but in oncology this is a long time, and even then, they do not know if there will be a ‘return-to-normal’ after 4-6 weeks. Doctors feel this is going to have a knock-on effect of a huge backlog of surgeries and treatments and it will impact the presentation and diagnosis of new cancers – essentially the whole pathway is being upturned. One hematology-oncologist in the US told us about a patient of hers who developed frozen shoulder and needed a steroid injection but can’t get it at this time so must manage the pain. Surgeons are paring down their practices, postponing elective procedures to limit exposure as well as to free up space with some operating theaters being turned into wards for COVID-19 patients. In a similar vein, ONCs are weighing the risk of potential coronavirus exposure with delayed monitoring. What the long-term effects of this will be is very much unknown, also the effect on patient volume, once it is safe to resume to ‘normal life’. Some ONCs are already halting clinical trial participation, others are continuing to participate but only for patients already enrolled or where there is no other possible treatment for the patient.
Some specific comments from physicians:
“I’m telling a lot of my patients to stay home…it’s not worth the risk.”
– Academic Hem-ONC, Philadelphia, US
“Science should move in parallel, not sequentially.”
– Cardiologist, New York, US
“You can only change the normal structure for so long: we will have a backlog of issues which will need to be dealt with eventually.”
– GP, London, UK
“Yesterday I talked to a patient who had disease progression and he’s interested in being treated, I’ve known him for a while…I have to judge over the phone whether he’s a candidate for treatment or not. Then his wife called and asked if he was going to die…these are conversations I would have liked to have in person, not over the phone.”
– Oncologist, Philadelphia, US
Is it ethical to continue market research during this time?
Doctors said yes, but that it’s important to be transparent about the topic as some HCPs may not be interested in less personally relevant topics. (HCPs were very interested in taking part in this interview though, given the topic was coronavirus). HCPs agree that normal life needs to continue, as does new drug development, and they feel market research provides them with an opportunity to contribute to this cause. Some HCPs — private practice or office-based practitioners in the US especially – have more time on their hands now that they are not seeing patients, and view market research as a welcome distraction. Some also view it as an important source of education and income, which is especially valuable during challenging times. They said that recruitment will need to be flexible based on practice setting (i.e. academics or those based in hospital settings may have less availability), specialty, and geography (for example, cities nearing their peaks – NYC, London – are to be avoided for a time).
Some specific comments from physicians:
“Physicians are happy to do these interviews because it gives extra income – most are bound to home.”
– Endo, Maryland, US
“I personally don’t think [conducting market research now] is an insensitive approach.”
– Cardiologist, New York, US
“The world moves on and this won’t reduce my appetite for market research. Generally we enjoy finding out about new treatments and new ideas.”
– Oncologist, London, UK
“Doctors are humans and we can’t work 24/7; we have homes and families and we like to do market research in our downtime, so it should still continue.”
– Cardiologist, London, UK
Sample: Research conducted 26 – 30 March 2020 with n=10 HCPs across the US and UK. US physicians were recruited from NYC, Philadelphia, DC areas. UK physicians recruited from London and the North. N=4 Oncologists, n=2 PCPs/GPs, n=2 Endocrinologists, n=2 Cardiologists.
By Anna Dnes
Accessing the ‘fast-thinking’ side of the brain through digital approaches can elicit better responses during market research, says Anna Dnes.
In 2011 Daniel Kahnemann’s best-selling book ‘Thinking, Fast and Slow’, described two different ways the brain forms thoughts: System One (Fast-Thinking) and System Two (Slow-Thinking).
He defines System One as fast, frequent and therefore almost automatic and subconscious thinking, while System Two comprises the slow – infrequent and conscious thinking that requires effort, employs logic and rational reasoning.
Through a series of experiments, Kahnemann highlights how these two different thought processes may cause individuals to arrive at different results, even when given the same inputs. Essentially, he explains why we do not always behave as perfectly rational human beings.
Kahnemann’s theory corresponds to the challenge the healthcare market research community has been observing for decades: that the logical, clear behaviour explained by a doctor or a patient in a market research interview is not always the same as their behaviour in the real world. Kahnemann also casts a new light on market research more generally by pointing to one of its major challenges: that it mainly engages the ‘slow-thinking’ side of the brain and very rarely taps into its ‘fast-thinking’ side.
On behalf of the pharmaceutical brands we work for, we need to ask ourselves what, as market researchers, we can do differently to overcome this challenge and get closer to our respondents’ ‘fastthinking’ thoughts and behaviour? One solution lies in the digital world. Short online tests have become the perfect way to harness the ‘fast-thinking’ part of our brains, whether employed at the start of a qualitative interview or within a quantitative survey.
Key considerations for designing digital tests to harness the ‘fast-thinking’ side of our brains:
1 Capping exposure time
To tap into the ‘fast-thinking’ side of the brain, market researchers simulate an environment where fast decisions have to be made. Market research settings have traditionally done the opposite, creating environments where respondents are encouraged to spend more time with information – be it brochures, medical journals, ads or messages – than they would in reality. In doing so, we put the ‘slow-thinking’ brain in gear and elicit different reactions to those of the ‘fast-thinking’ brain.
Capping exposure time limits the initial exposure time of the information to a short, fixed amount of time, so only the ‘fast-thinking’ side of the brain will be able to respond.
2 Capping and measuring response time
In an everyday situation, we typically try to make decisions as quickly as possible, rather than just quickly. This has provided an opportunity for us to turn some of the more traditional market research exercises into an online game, where decisions have to be made as fast as possible in order to avoid being ‘timed out’ (losing the game, so to speak). By measuring the speed of the responses on top of capping the response time, we go beyond surfacing the explicit thoughts, reactions and decisions, and identify the implicit drivers and the ease of decision taking; because the faster we can respond, the easier and more straightforward the decision is – and the harder it is for marketing to change that decision to another.
3 Measuring biometric reactions
When it comes to measuring biometric reactions, consumer market research firms tend to be ahead of healthcare market research in the pharmaceutical industry. Several consumer-focused market research agencies measure biometric reactions during the market research interviews. Increased heart rate, perspiration, facial muscle tension and EEG are example biometric indicators of the true reactions and emotions that lie outside of our control, meaning that they cannot be hidden or controlled by our conscious self. While the equipment today is still clunky and perhaps reminiscent of old sci-fi movies, the advent of wristbands that measure our exercise, sleep patterns etc. is exciting as it shows us that a more workable alternative for healthcare market research is not far away. Watch this space!
Can such digital tools make a difference to healthcare market research and pharmaceutical brands?
Yes. ‘Fast-thinking’ tests are invaluable in identifying deeper insights across a number of pre- and postlaunch objectives, including:
- Identifying the types of claims or communication materials that implicitly resonate versus those that do not
- Exploring the true treatment algorithm a doctor employs in his or her decision making, rather than those dictated by guidelines
- Pinpointing the implicit barriers a brand may face in being adopted more broadly
- Uncovering the true associations and beliefs about certain brands or companies, without any feelings of politeness or restraint from the ‘slow-thinking’ side of the brain holding that information back.
These digital tools are already making a difference to healthcare market research and pharmaceutical brands. To give a couple of specific examples, tapping into the ‘fast-thinking’ side of customers’ heads has been instrumental in uncovering which creative concepts are likely to achieve a behaviour change from a set of strong communication concepts that were all delivering on the intended message.
Similarly, these tools have been used to identify the core benefit that will motivate a change in prescribing drugs and can form the basis of a successful brand positioning, when all predeveloped positionings have failed to resonate.
Get inside customers’ heads
‘Fast-thinking’ tests will never provide all the answers, but they can be the difference between good and great market research. Plus, when taken in combination with the ‘slow-thinking’ elicited in traditional in-depth discussions, we can shed light on any disconnects between these two thinking modes – and the resulting conscious vs unconscious behaviour.
The outcome: more rigorous insights into how to motivate behaviour change. Be it a switch towards a brand, improving patients’ compliance or changing the perception of brands in customers’ minds. This movement has started to gain momentum among the healthcare companies which view deeper understanding of their customers as critical to success. In these times of needing to do ‘more for less’ the rate of increased usage of these approaches across companies that have embraced them suggests they are seeing a clear ROI from using ‘fast-thinking’ approaches.
About the Author
Anna Dnes is a Senior Research Director at THE PLANNING SHOP, specialising in global qualitative market research. With a background in consulting, she has over seven years’ experience in pharmaceutical market research. Anna has an active interest in harnessing digital technology for market research and has led the digital new product development team for the past five years.
By Phil Dunn
There are three guiding principles that should underlie successful market segmentation, and therefore the success of a pharma brand. Phil Dunn explains the process.
Segmentation research is a lot like the sky on the marsh where I live. It is big. It can take many shapes and colours. You need to experience it and know it well to appreciate its benefits.
Over 25 years as a market research expert I have found that there are three guiding principles that can make or break the success of segmentation, and therefore the success of a brand. Getting them right results in a compelling and valuable segmentation.
The alternative is an interesting, but bland, segmentation of little commercial use. After all, segmentation is an opportunity to look beyond what you think you know now and uncover insights that could give the brand the marketing advantage it deserves.
The three principles can be summed up by ‘ACE’: A for Ambition, C for Creativity, and E for Energy.
A for ambition
More than any other form of research, segmentation needs to start with specific goals. It is important to know from the outset why the brand needs segmentation and how segmentation is likely to be used.
This may seem straightforward, but often different parts of a business will answer these questions differently. Therefore, from the outset invite as much input as possible from as many potential advocates and detractors of segmentation on the ‘why’ and ‘how’ to kick-start a debate or workshop about what it should achieve and what it must avoid.
This will focus minds and shape the process, so that the brand team and the research that the business needs to complete will deliver against that ambition.
Research considerations during the ‘Ambition’ stage include:
- Understanding what form of segmentation is required (e.g. prescribing behaviour, attitudinal, psychographic or more fundamental – a priori or post hoc).
- Knowing who will use the segmentation analysis
- Understanding what they will they do with the analysis – i.e. pharmaceutical reps putting doctors into types using a typing tool
- Deciding what research exists that could jump start the process or negate the need for a first stage of qualitative research
- Clarifying the working hypotheses about how the expected segments are characterised
- Knowing what previous segmentations the client has seen. What worked and what didn’t work?
- Understanding if there are any trends, breakthroughs or competitor activity that need to be considered
- Determining the preferences and dislikes of the stakeholder audiences that need to be considered
- Knowing what country, or affiliate-based issues
to consider. It may be that one or more affiliates have already developed a
segmentation. These experiences need to be addressed for several reasons
- There may be a segmentation model used by an affiliate that could be validated and adopted globally, saving a lot of time and money.
- There may be learnings about the research process or about the doctor population that could prove invaluable.
- There may be genuine concerns that a global segmentation may not be acceptable or that local nuances need to be given greater weight in the final segmentation than first thought.
C for creativity
Having agreed – and defined clearly – the ambition for segmentation, the next step is to inject as many forms of creativity as possible into the research, and the way it is rolled out to the business. Research methods can feel generic.
Agencies will talk about qualitative and quantitative research, but the creativity needed for pharmaceutical segmentation goes beyond method.
A useful analogy is this: it is accepted that if we need to travel to New York on business we will fly. Therefore, it is no longer normal to eulogise about the benefits of flight.
Airlines understand this, so it is unlikely you will see an advert that says ‘Wow, we can fly!’ Research is much the same; it is not the method, but what you do with it and what you find out that matters.
Creativity comes from the content of conversations with physicians or patients: how they reveal insights the business will find valuable; how these same insights inform the creation of segments and the outputs needed to communicate them.
Creative approaches to both the research and how it is delivered are available, but experienced guides who know these approaches will deliver the valuable insights.
However, creativity should not be limited to the research. Stakeholder involvement and the way the segmentation is rolled out to the business needs to be as engaging and creative as possible.
Agencies and client organisations need to ensure that segmentation does not become just another meeting, just another presentation, or just another research project.
It is too valuable to the success of brand to be routine. It is also too valuable to be made into an education in statistics.
Of course, whatever we do has to be grounded in solid and reliable information, but we mustn’t allow this to get in the way of the fundamental need for segmentation to be meaningful and engaging.
What motivations, hopes and fears may exist that could be exposed in the qualitative research?
Research considerations in the ‘Creativity’ stage can include:
- What qualitative techniques will explode the myths and create potential hierarchies or dimensions for the later stages? Often the best approach is to keep the qualitative research very broad. The tighter the focus – and the greater the imperative not to go over familiar ground to help get new news – the more likely you are to miss something of real value
- What motivations, hopes and fears may exist that could be exposed in the qualitative research?
- Think about bridging the gap between qualitative and quantitative research with transition meetings, gamification exercises and client engagement
- Build iterative processes into the design of materials – e.g. questionnaire flow, draft questionnaire, pilots and the final version
- Use an array of techniques in the qualitative research to unlock insights that go beyond rational explanations of behaviour to evoke emotional explanations
- Use stats primer meetings with the client to engage with the process
- Think about key segment driver selection
- Employ ‘difference analysis’ to make the segment differences stand out
- Run a client gamification workshop
- Outputs – these must be more than just bar and pie charts!
- Use storytelling to convey important segment differences
- Turn segment stories into a video montage
- Create segment dashboards
- Use posters, postcards, or walk the wall sessions at the final debrief to help embed the segments quickly
- Map in external data (for example, Rep data).
E for energy
It is not unusual for segmentation to take six months or longer (from discussions about the need to segment, to conducting the research and rolling the findings out to the business). Therefore, it is important to keep energy levels high and spread evenly across the whole process. When it comes to ‘Energy’, Segmentation can be divided into three blocks of tasks:
- Planning and set up
Planning may take 1-3 months, research 3-6 months and embedding 1-3 months. However, the level of energy required over the three phases is likely to be similar. Often energy levels dip towards the end of segmentation (even though this is probably the most crucial time for the business to get to know, and plan, how to implement the segmentation). In order to inject energy into the process, add some fun into milestone meetings, by offering more light-hearted activities or inexpensive rewards to celebrate everyone’s commitment, for example.
ACE your next segmentation project ACE your next segmentation project by keeping in mind the three factors: Ambition, Creativity, Energy.
And, like the big sky on my marsh, to fully appreciate the nuances of segmentation, get yourself an experienced guide.
About the author
Phil Dunn is MD of the EU office at THE PLANNING SHOP, and heads up The QuantSHOP, a specialist quantitative research practice. His role encompasses innovation on new research approaches, working with clients on quantitative research studies and facilitating brainstorms and workshops for client specific projects. With more than 25 years’ experience of managing quantitative research Phil has a wealth of expertise in segmentation, conjoint and pricing as well as communications testing (such as message and concept testing).
By Emily South (and Kate Khair – contributing author)
Are we seeing the patient’s world as clearly as we possibly can? Will a more complete picture help us to build better brands?
In business, making assumptions can be an important first step to solving problems. But it can also bias us in how we frame the challenges, the questions we ask, and the decisions we make. It’s the same for healthcare market research and pharmaceutical interactions.
The way we think about individuals living with illness, and how we design research and create solutions can be led by our own biases and assumptions about people. For example, as stated by Lorraine M. Thirsk ( 2014 ): “The focus on ‘self’ in ‘self-management’ can lead us to think about chronic diseases as a largely independent activity and that people require individual solutions.”
In addition, the word ‘management’ implies there is a set of strategies that everyone can work with consistently and effectively.
When designing research methodologies, we tend to zoom in on the main characters to learn about their experiences; the person living with the illness, the physician…maybe even the carer or the nurse.
And when understanding prescribing behaviours, we focus in on the physician-patient consultation. But what if this ‘individual focus’ is not telling us the whole story? Do we miss out on a valuable part of the story? Are the missing pieces key to the research objectives or to the brand we are helping to build?
An individual focus may not be accurate. Chronic diseases can be viewed in a more connected sense, “embedded in family, community and societal conditions that shape and influence” (Kendall, 2010).
Furthermore (paraphrasing Fritz Heider), we are all unreliable witnesses of our own behaviour. This is complicated further with the emotional burden for people living with an illness, impacting what they are able to recall and sharing with us only what they believe we want to hear.
Challenging an ‘island view’
At THE PLANNING SHOP, we have been conducting research to challenge what we call an ‘island view’ of the patient, by introducing ‘witnesses’ to our studies.
These are the people who are usually absent from research, but who have an important perspective and can potentially influence management and treatment. Taking severe haemophilia as an example, we recently completed a piece of UK qualitative research to see if ‘witnesses’ add value to patient research. We included witnesses to help us build a more complete picture and uncover deeper insights that we believe can lead to more effective brand building.
From the outset we chose a more open approach to the study, enabling us to include a wider range of roles – clinical and non-clinical – who we would not normally speak with. The recruitment process involved:
- Mapping all potential touchpoints of a person living with haemophilia (people considered to be in their team)
- Use of descriptive statements in the screening materials to describe the potential influence and involvement of ‘witnesses’ as well as the ‘main character’ roles
- Inclusion of a diverse sample of individuals viewing the haemophilia experience from different angles.
Our methodology included the use of indirect questioning, self-discovery exercises and challenging different team members with different viewpoints. We explored the most important connections and relationships with remote and live in-home discussions to build both depth and breadth of understanding.
Before we move onto the research outcomes, let’s talk haemophilia. What is it?
Haemophilia: Invisible. Unpredictable. Malicious.
Haemophilia is a rare, usually inherited, genetic disorder that inhibits the blood’s ability to clot, with types A and B affecting different clotting factors. 2017 UK annual data shows 9,639 people (mostly males) living with haemophilia in total, with 2,295 severe cases. These numbers exclude female carriers who may also have symptoms, and the wider sphere of different family and friends for whom haemophilia impacts.
Haemophilia can be described as:
Invisible: bleeding is the most identifiable sign, but it is often accompanied by chronic joint pain and psycho-social issues. The combined limitations and lack of wider community understanding can make haemophilia anti-social and isolating, lending a wider meaning to ‘invisible’
Unpredictable: even the most experienced person cannot always anticipate when or how haemophilia will strike; a repetitive task at work, a night out with friends, a simple knock at home or a trip on the pavement
Malicious: one day you might be busy with life, the next day you could be temporarily debilitated in a wheelchair, interrupting important plans and quality of life.
An underlying tension in the world of haemophilia
With treatment advances – such as selfadministered factor infusions – haemophilia care has moved from the hospital into the community. Comprehensive Care Centres (CCCs) with inhouse multi-disciplinary clinical teams including the haematologist, specialist nurse and physio (and psychologist in larger centres), are now providing hubs of expertise designing treatment and management plans, where people living with haemophilia can self-manage in the community and live their lives.
However, our research uncovered an underlying tension in haemophilia: living an independent life and self-growth, in a medicalised system. A tension which results in an ongoing risk-benefit gamble for patients and carers throughout their lives, with people asking themselves questions like:
- “Is it worth the risk of a bleed or chronic joint and pain issues?”
- “Shall I follow the rules?”
- “Who am I?”
Our research has shed light on how people living with haemophilia find their way around this tension.
Insight one: Identity and tackling the lion
To begin to explain this tension we need to tell a story about Hercules.
Nemea the lion was a vicious monster in Greek mythology and Hercules had a huge task to conquer Nemea. After much persistence Hercules killed the lion with the force of his hands. Once dead, he removed the skin of the lion and used it like armour, making him invincible. In psychological terms, to fight the lion means to face our deepest fears, but to accept our weaknesses as part of our identity (wear the skin) is to be transformed.
Interestingly, the goal of being brave and wearing your haemophilia with pride is what the HCPs we spoke to try to inspire people living with haemophilia to do. Role models such as some patient influencers wear their haemophilia in a similar way. Take Christian L Harris for example, whose own severe haemophilia has inspired his fashion designs. Or Chris Bombardier who is raising awareness by completing the seven summits challenge with severe haemophilia.
But is this a realistic and desirable goal for all people with haemophilia?
We see there are different and overlapping paths taken by people living with the disorder:
– The regular guy: through adjustments and adaptions haemophilia is kept in the background and does not play a starring role. A sense of wellbeing and belonging is achieved
– Social withdrawal: on the journey towards being a ‘regular guy,’ patients can be derailed by the limitations placed on them by the disease leading to social withdrawal and isolation
– Low self-worth: their personal identity can be consumed by the negative associations of haemophilia and they can experience a loss of self-worth.
Those who have been affected by the contaminated blood crisis in the 1980s and blood borne viral illnesses may be particularly prone to the ‘cul-desacs’.
The paths for someone living with haemophilia are not consistent or straightforward, which lends value in understanding the perspective of ‘witnesses’ who accompany them in their world.
Insight two: The haemophilia team
The people with haemophilia in our research acknowledged that a team of individuals surrounds them. One person told us that he and his team collectively form “one functional person”. When observing the carer parent (typically Mums) and child team versus the adult team, we noticed that they are different in size. The parent and child teams tend to be large and varied. Adults have a smaller and intimate team. During clinical transition (from paediatric to adult care), teens and young adults leave behind what was their parents’ team and build their own trusted team from scratch.
Romantic partners or best friends are often the adult patient’s most influential team members – more so than the medical team. This team evolves over time through the course of different life events (e.g. relocating, marriage, having children etc). A partner or a best friend (unlike the medical team) can be confided in over the long-term, offering regular emotional and practical support.
Our research showed that the clinical team, however, perceived things differently. They acknowledged that the person living with haemophilia has a team surrounding them, but they over-estimated the influence of wider friends, immediate family and independent organisations or charities rather than the trusted team. How does this happen? People living with haemophilia stated how wider friends and immediate family “don’t get it,” organisations don’t offer valuable support locally, or they are comfortable with others not knowing too much because it creates too many questions and distractions from their everyday lives. There may also be geographical, cultural and religious reasons for people not being open about their health status.
Importantly, the clinical team over-estimated their own influence, believing they offer more emotional support than people with haemophilia think they do – sometimes under the guise of education.
There are three core reasons for these disconnects and tensions from a clinical perspective:
- The geographical distance of CCCs from people
living with haemophilia and their families and once or twice-yearly face to
face interactions with the clinical team
- The physician focus on clinical aspects: ‘blood
and joints’ and the assumption that haemophilia is ‘manageable’ for everybody
- Simultaneous trust and distrust: trust in medical expertise, but lack of trust in the medical team’s understanding of their lives and desires as a person.
The reality of living with haemophilia is complex. Patients surround themselves with a trusted network of individuals. Speaking with these team members is vital to understanding how people navigate their world with haemophilia.
The clinical perspective is not sufficient for understanding this. The most critical team members are a subset of all the witnesses we spoke to and represent a new target for research and brand building – the ‘Outside-In’.
Insight three: The unique perspective and influence of the ‘Outside-In’
The ‘Outside-In’ team members of the person living with haemophilia or parent carer:
- Are not necessarily part of the multi-disciplinary clinical team or part of family or friends
- Have come from the outside and are now on the inside, meaning they are able to give a fresh perspective on haemophilia (e.g. a new romantic partner)
- Know the person living with haemophilia or parental carer inside-out.
In our research we identified many examples of ‘Outside-In’ team members – these individuals are in a unique position to not only share their view of the person’s world and experience, but also to take an influential role and effect change.
An example of an ‘Outside-In’ team member who took part in our research is Sarah:
Sarah is the relatively new partner of John who lives with severe haemophilia. As part of the research we conducted in their home, the couple shared some interesting anecdotes:
- Sarah activates and augments John’s engagement with treatment. In discussions, John compared his adherence to treatment before and after they met:
“I know sometimes they [the bleeds] go untreated – I would say that’s quite rare now… 10% would get treated previously, and 10% might be left untreated this time round.”
- Sarah takes an ongoing role in monitoring and communicating John’s treatment via a haematology app called the Haemtrack app. John takes a more passive role. He said:
“I wouldn’t do that. I’d forget to be quite honest. So you’ve [Sarah] got it on your phone. I haven’t got it on my phone.”
Sarah also helps to filter information to John in a way she knows is digestible from sources online and by being an active member of the Haemophilia Society (unlike John).
- Haemophilia is not just about looking out for the immediate patient. It’s about future generations too. During discussions Sarah dropped the word ‘daughters’ into a conversation with John’s long-term haematologist. This was planned to have a domino effect. Sarah had previously recognised that John’s daughters from a past relationship were carriers of haemophilia. They all knew this, but there were no proactive conversations going on. John believed:
“It would have been on the [medical] record, but then it just gets lost.”
Sarah clarified that a conversation with the doctor would never have been prompted by John or his doctor without her and said:
“Because of my career (as a healthcare professional), I know what questions to ask… maybe nobody else would.”
As a direct result of Sarah’s intervention John’s daughters are now receiving adequate information on haemophilia and available treatments and can start to plan their own families.
Sarah’s anecdotes show that the ‘Outside-In’ are highly conscious of the person’s experience and are influential within their world. We identified many other individuals like this, clinical and non-clinical.
For example, a support worker who had a unique birds eye view of the multi-disciplinary team, and who also had a view of people who would never usually take part in market research, and a young man having social and housing issues who retreats to online gaming to actively avoid managing his haemophilia.
In summary the ‘Outside-In’:
- Create positive adjustments and adaptations to the person’s lifestyle
- Are highly engaged and influential in treatment and management
- Enable the people they care about to live in the moment rather than reflect negatively on the past or worry about the future.
Ultimately the ‘Outside-In’ are creating resilience and ongoing functional wellbeing – more complex than simply emotional or practical support. As time moves on they expect to have an increased role in the lives of the people they support with haemophilia.
We have picked out this specific group of individuals because they are significant influencers and could help us to piece together a more accurate picture of the patients’ experiences. Other team members were valuable to speak with as well – especially in collaboration with the person living with haemophilia. For example, where the individual with haemophilia wasn’t able to express themselves, the team member was able to fill in the gaps. Simply their presence in the conversation and acknowledgement of the issues led to more natural and collaborative discussions.
Importantly, by speaking with the ‘Outside-In’ and other team members, we were able to gain a more complete picture of the person’s experiences with haemophilia and understand how the important tensions in haemophilia mentioned earlier are currently being navigated, serving as a solid platform for communications and solutions generation.
Our findings raise important considerations for the clinical approach to haemophilia care in the UK National Health Service (NHS). The focus on independence and self-management doesn’t necessarily reflect the reality of what management in the community entails.
There is potentially a need to re-think how clinicians can support and engage in the person’s world via their haemophilia team (as long as privacy considerations allow). For example, adults who wish to bring their team into the relationship with the clinical team should be encouraged (not judged by the clinical team), because team members can add valuable insights impacting personalised treatment and management decisions. It is also important to note that there is a tipping point for new and innovative treatments – for example, will less need for hospital delivered care lead to more isolation for haemophiliacs?
Outcomes and ideas
Brand engagement has come a long way since sales representative product messaging to physicians. We have started to acknowledge patients as engaged and influential people in treatment and management. It is now time to zoom out to reveal the world of the person – a wider web of social interactions and situations – a more complex system of decision influences and triggers. We believe this broader picture is currently an untapped resource of experiences and insights across therapy areas.
Solutions driven by the ‘Outside-In’
We have learned that the ‘Outside-In’ team have a transformational effect and are important influencers in the world of the person. We suggest brands tap into the problem-solving skills of the ‘Outside-In’ for solutions and ideas generation. As experts in the desires and quality of life of people who happen to have an illness, and with experience in creating lifestyle adjustments, the ‘Outside-In’ can help brands develop solutions that connect better, are more sustainable and work beyond an individual level.
Diverse brand engagement
Brands need to be able to engage with multiple team stakeholders and evolve tactics across life stages with channels and messages tailored to the right people at the right time. When services are being created, pharma brands need to be conscious of ‘connectability’ and input from wider team members. For example, brands can create campaigns like Alzheimer’s brands and charities that recognise the importance of the role of carers and families. This idea can be built upon even further; taking inspiration from consumer brands like Kraft and Premier Foods who are using insight gained from family, friends and communities to create campaigns and tactics that are tapping into the desire of connecting people together. One example is the Bisto ‘Together Project’, highlighting loneliness with their ‘Spare Chair Sunday’ project and bringing friends and family back together who have lost touch.
Communications through the lens of life
We encourage brands to create a new language to be more relatable. Patients are people living with an illness. Creating higher purpose and communicating through the lens of life will create stronger positionings and differentiation in crowded and clinically focused markets, ultimately building trust. This is whether it’s helping the clinical team to quickly understand the person’s context and desires in consultations to create tailored solutions or creating resources that move beyond educating about narrow medical moments to instead helping people to live their lives better.
It is a new era. We need to zoom out to understand the person’s world and experiences as clearly as we can. We need to understand all of the factors that influence them within their context. We need to use the ‘Outside-In’ to create valuable brands that speak to the people that use them.
About the authors
Emily South is Innovation Director at THE PLANNING SHOP. With a curiosity for people, stories and problem solving, Emily drives the development of new research approaches and tools for effective brand building.
Emily has a BSc Hons in Anatomy and Human Biology, and Biomedical Science from the University of Liverpool.
Chair of the nurses’ committee of the World Federation of Haemophilia
Dr Kate Khair is chair of the nurses’ committee of the World Federation of Haemophilia and a leading specialist nurse in the UK, based at Great Ormond Street Hospital, London.
Kendall, P. (2010). Investing in Prevention: Improving Health and Creating Sustainability: the Provincial Health Officer’s Special Report. Office of the Provincial Health Officer, British Columbia.
Lorraine M. Thirsk, A. M. (2014, Maya What is the ‘self’ in chronic disease self-management? Retrieved from https:// www.journalofnursingstudies.com/article/S0020-7489(13)00283-6/fulltext
Jeremy Smith discusses the cost:benefit ratio of the rising prices of new oncology treatments and how the pharmaceutical industry and regulators can adequately address them while still promoting R&D.
Oncologists and pharmaceutical companies are increasingly discussing the cost:benefit ratio of cancer treatments. It is a topic that is under the microscope, particularly now, with the advent of immunotherapies. These come with a hefty price tag of approximately $100,000 per patient per year, compared to carboplatin + paclitaxel, a standard treatment for squamous cell Non-Small Cell Lung Cancer (NSCLC), which could cost $30,000-$35,000.
Looking at the cost:benefit ratio of these treatments as a sliding scale, though, it could be argued that immunotherapies may fall more on the side of benefits (as opposed to cost). Because, although expensive, they are currently approved in malignancies where survival has been measured in months, not years, and the side effects during treatment can be less intrusive.
Conversely, many of the newer haematologic malignancy treatments are equally, if not more, expensive, but they are used to treat patients in diseases where survival is measured in years, not months. Nonetheless, and regardless of the type of malignancy, the treatments are resulting in financial toxicity for patients. So, what happens now? Let’s look at this debate in more detail.
Immunotherapy results for treating solid tumours
According to Cancer.org, the five-year survival rate for Stage IV NSCLC patients using traditional chemotherapy is less than 5%. Comparatively, if a patient is treated with nivolumab (an immunotherapy marketed as Opdivo), recentlypublished data, at the American Association for Cancer Research (AACR) annual meeting 2017, show the treatment increasing the five-year survival rate for Stage IV NSCLC patients from 4% with standard of care (SOC) chemotherapy to 16% in all-comers (and 43% in patients with > 50% PD-L1 expression).
In addition to the improvement in survival rates, immunotherapies also produce fewer adverse events, which is likely to lead to better patient quality of life. This is no small consideration, especially when all treatment is ultimately only palliative. The benefits of immunotherapy can be huge – even if the costs are huge too.
If immunotherapy falls on the benefit side of cost:benefit scale, where should many of the new haematologic malignancy treatments sit? Unlike some solid tumour patients, many haematologic patients have survival rates measured in years, not months.
However, many of the newer haematologic malignancy treatments combine multiple (as many as four) different drugs. And, in a regimen where there are multiple branded products, this means the costs can be significantly higher than $100,000 per patient. Finally, not only are multiple branded medications needed, but the duration of therapy is often longer in haematologic malignancy treatments than in solid tumour treatments.
Yes, the five-year survival rate for all Multiple Myeloma patients is 49% – which is nearly three times that of all (not just Stage IV) NSCLC patients. And longer survival rates are a positive outcome. However, the treatment costs can be enormous.
Even though many of the new haematologic malignancy treatments are less expensive individually than immunotherapy agents, they still come with a hefty price. For example, elotuzumab, for a Multiple Myeloma patient weighing between 154 and 176 pounds, will cost $142,080 for the first year and $123,136 for each subsequent year. This is a huge cost in itself. But keep in mind that these costs are for elotuzumab alone, and the treatment often needs to be used in combination with lenalidomide and dexamethasone, which adds an estimated cost of approximately $125,000 per year, bringing the total cost to $248,136 – $267,080 per patient, per year of treatment.
Elotuzumab increases the four-year progressionfree survival rate (when added to lenalidimide and dexamethasone) by 7%, from 14% to 21% for patients with 1-3 prior lines of therapy. However, elotuzumab is given until treatment progression, which means that those 21% of patients still responding at four years could end up spending $511,488 for elotuzumab alone.
New treatments in oncology – whether solid or haematologic – are producing better efficacy and improved tolerability. The benefits are immense. However, the price tags can lead to huge financial toxicity for patients.
So why are the treatments so expensive and how can the balance be redressed?
According to a 2014 study by the Tufts Center for the Study of Drug Development (CSDD), the estimated cost to develop a new prescription drug for marketing in the US is $2.6 billion. Compare this to a much lower figure of $800 million in 2003. Pharmaceutical companies need to pass their costs on, so we can see why the end price points to patients have risen. Pharmaceutical companies also want to develop new drugs and the revenue they receive from their marketed products is what finances this new drug development.
Regulators wish to simultaneously reduce costs to patients while continuing to encourage new drug discovery. It is a tricky problem. While many people would agree that financial toxicity can be debilitating, how to correct it is much more complicated.
Back to the cost:benefit ratio. What’s next?
All of these data points and costs are interesting but what does it all signify, and how should the cost:benefit of new treatments be evaluated?
Historically, a statistically significant improvement in progression-free survival, regardless of solid or haematologic malignancy, has been enough to warrant regulatory approval. However, in June 2015, the American Society of Clinical Oncology (ASCO) published a proposed framework, which it subsequently updated in May 2016, to assess the value of various cancer treatments with the goal of evaluating treatment regimens on the basis of their clinical benefit, toxicity, and cost.
Despite the fact that there have been no changes in pricing, reimbursement, or approvals as yet, and costs continue to rise, perhaps the approval authorities should be looking at different criteria – such as a certain percentage increase in efficacy (for example quality-adjusted life years and the value to patients and their families), not just statistical significance – to justify the higher costs.
As it is, there is anecdotal evidence that patients, particularly in the US, are already evaluating the cost:benefit of their prescribed oncology treatments and making their own decisions accordingly. A recent policy brief published by Rice University’s Baker Institute for Public Policy cites that the 8-to10-year survival rate for Chronic Myeloid Leukemia (CML) is 80% in Europe, where treatment is available and affordable to all patients. In the US, as a comparison, the high drug prices could force many patients to omit or compromise treatment, which reduces the five-year survival rate for CML to only 60%.
While most agree that some sort of pricing reform is needed, the underlying question is how to adequately address the astronomical prices while still promoting further research and development. And what impact should the current survival rates have on this evaluation? There is no easy answer, and these decisions have far-reaching implications. It is certainly something for everyone to scrutinise particularly as even more personalised treatments are produced. For example, CAR-T which is now approved and costs between $373,000 and $475,000 for each patient.
Impact on market research
The market research world often tries to decouple the financial impact from the clinical strengths and weaknesses of a treatment, in order to understand the drivers and barriers to use. As costs continue to rise, this not only becomes more difficult, but possibly also misleading. Even though oncologists sometimes claim to try not to consider costs when weighing treatment options, in order to recommend the best option, can they realistically be expected to ignore the fact that many of these treatments now cost more than double the average annual salary of their employed patients?
From the perspective of market researchers, in order to fully understand the likelihood to use one of these costly treatments, attention should be paid to the impact of cost, and the financial toxicity for patients.
The obvious answer is the inclusion of payers in the research plan to understand expected pricing, formulary tier, and patient out-of-pocket costs. However, it is probably not enough to stop there.
Oncologists are becoming more sensitive to cost so reserving a section of the discussion guide for a cost:benefit evaluation could also be beneficial. There, it would be possible to understand how oncologists balance the cost:benefit through a live perceptual mapping exercise and/or an explicit evaluation of price. For example, it could be beneficial to understand what percentage of patients would be likely to receive a given treatment at various price points. (There is a flip side to this, though – one that is controversial. As it is popular right now to mention costs even though it appears to currently have little impact on oncologists’ decisions and is not something they discuss with the patients unless specifically asked, since their ultimate goal is to provide their patient with the best available treatment.)
The evaluation of a new product’s effectiveness is probably changing in the clinic to include some level of cost:benefit evaluation and market researchers should be changing as well to provide the most accurate cost:benefit information to clients.
About the author
Director of Client Strategy, THE PLANNING SHOP
Jeremy has over 12 years of global pharmaceutical research experience, including over three years of exclusive oncology experience.
By Emily South
Whilst many in the Healthcare world have been focussed on the aging population and their effect on hard pressed health providers or wondered how the “have it all” Baby Boomers will react to diminishing personal health – the Millennials have crept up on us. Surprisingly Millennials, born between the early 80’s and the end of the century will soon surpass those Baby Boomers in actual numbers. This younger generation deﬁnes itself by the technology advances made by their parents. They see “Technology use” as what makes their generation unique and use their personal digital devices everywhere from the bathroom to the bedroom, in the street and in the ofﬁce. What’s more they rate a brand or service on its use of technology more than on the brand itself, tending to be introduced to their brand or service via linking, pinning or tweeting information on social media.
So what do pharmaceutical companies need to bear in mind when marketing to Millennials? Here are six insights that can help your brand gain traction with this generation.
Insight one: Provide Millennials with a higher purpose beyond the brand
Millennials have grown up with a bombardment of information; spoilt for choice they have learned to actively ﬁlter where they choose to focus their attention and on which device (parents know this only too well). Marketers and their advertising only have a few seconds before Millennials become their biggest fan or pull the plug. So what does this mean for marketers?
Millennials genuinely want to be inspired by brands, so brands need to give something back that will deliver on a higher purpose. Pﬁzer launched their US campaign – “Because they share”, which encourages young people to take selﬁes and post them online after receiving their vaccine shot against meningococcal disease B. By tapping into the idea of sharing, which ironically is what puts this group at increased risk of this disease, the product is being promoted, but also empowering patients to educate their peers on the importance of vaccination.
Insight two: Sell lifestyles
Not only are Millennials looking for a higher purpose, they are also seeking out experiences – considering this just as vital as establishing a career. The increased ability to travel more easily and cheaply means Millennials have a new sense of freedom and do not want their health concerns to hold them back. There is signiﬁcant opportunity for healthcare companies who are able to promote lifestyle services, whilst encouraging proactive engagement of patients in their own healthcare. The NHS in the UK have recently made a move in this direction by collaborating with Pharmacy2U to offer a home delivery prescription service. Hardly a unique idea, but one that will make a signiﬁcant difference for many patients, and in particular the Millennials, brought up on ASOS and Amazon.
Insight three: Help them ﬁnd ways to manage the pressure
They are feeling more pressure than ever of ‘emerging adulthood’. Whilst they don’t worry about retirement or the frailty of old age, they are anxious ‘in the moment’. They are concerned about making the right decisions about their social status, career, an affordable home, starting a family etc. In order to make a decision Millennials are happy to spend hours searching online, in order to get it right.
Clearly none of us wish pharmaceutical marketers to exploit this anxiety but rather help create smart tools to support decision making: fast access to the right content and in an engaging, digestible format. An example to follow would be MyFitnessPal, which is the most popular health and ﬁtness app in the world; the app’s database of more than six million foods makes it easy to track your diet, no matter what you eat. Whether you’re trying to lose weight or put on muscle, the app helps determine the best things to eat to meet your goals.
This is the kind of support Millennials value and will ultimately pay back to those seeming to understand their needs.
Insight four: Support a more diverse doctor-patient relationship
The modern doctor-patient relationship is complex and not deﬁned easily, but there is no doubt that patients are contributing to the conversation more than ever. A side effect of this newfound conﬁdence is to question how satisﬁed we are with this relationship and Millennials will further this trend. Physicians are already prey to subjective online star ratings such as on iWantGreatCare.org, and with the integration of more objective measures such as quality metrics, seeking the wisdom of the crowd will become the norm in order to seek trusted relationships.
Trust, however, is simultaneously going to compete with modern lifestyle demands; for common complaints and short-term illness Millennials will see greater value in the convenience of remote and on demand telehealth. Opportunities exist to continue supporting doctors with this evolving patient conversation and helping the Millennial healthcare professionals ﬁnd a modus operandi with the Millennial patients.
Insight ﬁve: Tap into the social power of online patient advocates
While the baby boomers are sceptical as to whether online information is ‘true’ and ‘trustworthy’, Millennials cite the anonymity and personal stories as key factors that render social media a credible source of information for them. The result: patient bloggers who share their personal story and experiences online have large followings and signiﬁcant inﬂuence over which brands are, and are not ‘for you’ and – in the context of healthcare – which diseases need our help.
Take Stephen Sutton for example: diagnosed with colorectal cancer at the age of 15, Stephen set up his own website and blog, where he posted his ‘bucket list’ of things to do in his ﬁnal months. His blog created unprecedented awareness of colorectal cancer and within 1.5 years, over £4 million had been donated to a charity funding research into this disease.
Healthcare companies should not only be listening closely and embracing these brave individuals, but also actively measuring and reacting to the market changes they are presaging.
Insight six: Integrate patients (and doctors) in your brand development process
Despite their increased anxiety, many Millennials will trump this with a strong sense of aspiration and a need to do better than their peers; resulting in a strong momentum to improve and innovate. But how can this best be capitalised upon by healthcare companies? Merck took a leap forwards by running a longitudinal patient community alongside the brand development of their new allergy products through to launch. This enabled an ongoing engagement and innovation process, creating a fertile discussion forum for uncovering insights and generative solution building.
With their reliance on technology, their openness to social media, their suspicion of unfettered capitalism and the older generation, the Millennials can appear a challenging audience. But by understanding them, engaging them and cocreating with them marketers will ﬁnd a willing and resourceful customer base.
About the author
Emily South is the Innovation Director at THE PLANNING SHOP. With an active interest in people, stories and ideas, Emily drives new product development for effective pharmaceutical brand building.