Dear Friends, Colleagues and Partners,

With the advent and spread of the coronavirus we’ve entered unprecedented times. Times that we’ll no doubt look back upon in years to come and remember vividly because we’re all having to adapt at a rapid pace – day-by-day and hour-by-hour.

Speaking of adapting… as we navigate these unchartered waters, it’s not business as usual for us, but it is still delivery as usual. However, because the health and safety of our team members, clients, parents and families is our primary concern, we have made some changes to the way we work:

As we’re totally committed to assisting you with insight-led brand communications, we have also made some changes to the way we gather knowledge, for example, we’ve been re-engineering all our insight-gathering methodologies to ensure they are effective when conducted remotely.

Sharing is caring! Work from home hints and tips

Working from home is becoming the new norm and the change in environment may be a struggle for some. If this is the case for you, we thought you might like to read our handy ‘Working from Home Hints and Tips Guide’. Because of the nature of our work, many of us have been working remotely for years and we think we have some pretty good advice to share!

Isolation shouldn’t be… isolating

Finally, for good mental health and to stay connected with fellow human beings, follow our social media channels where we’ll be posting all kinds of ‘light-relief’ news and information from our team members about their WFH adventures, favorite books, TV shows, cute pets, etc.

We’re on:

Instagram: @theplanningshop
Facebook: @theplanningshopintl
Twitter: @theplanningshop
Linkedin: @the-planning-shop-international

Feel free to get in touch too if you simply want someone new to talk to on any given day!

We hope you, your families and loved ones all stay safe and healthy over the coming months.

Take care,

From everyone at THE PLANNING SHOP

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.

The high cost of treating many haematologic malignancies

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

Jeremy Smith
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 (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:

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:

Our research has shed light on how people living with haemophilia find their way around this tension.

Research outcomes

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:

  1. 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

  2. The physician focus on clinical aspects: ‘blood and joints’ and the assumption that haemophilia is ‘manageable’ for everybody

  3. 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:

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:

  1. 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.”

“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).

 “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’:

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

Patient world

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
Innovation Director

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.

Kate Khair
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.

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References

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

Introduction

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.

May 2019 saw the BHBIA 2019 Annual Conference take place in the sunny, regal surroundings of Windsor. Not only was it the first time in recent years that the event was held outside the centre of London, but it was also the first year the BHBIA themed the conference with a variety of subjects instead of one over-arching topic. The diversity of subjects over the two days showcased so many amazing projects and bold ideas carried out by old and new faces across the industry, that team members and I from THE PLANNING SHOP were proud to be part of the event.

An emotional and inspirational keynote address from Anthony Bennett – a survivor of a devastating illness as a young adult – kick-started the conference. Anthony made the delegates think about how we order our priorities within the context of our everyday working lives and how we can ‘reboot’ our motivations to redefine our fears and recognise opportunity when it presents itself. His personal experiences, whilst clearly physically demanding, also highlighted the mental barriers we sometimes see without focussing on the strengths that come from clearing these hurdles.

Throughout the rest of the first day, several technology talks highlighted the opportunities that Artificial Intelligence (AI) is having on our industry now and in the future. Different perspectives were put forward about whether we should tread carefully in adopting these technologies or grasp them with both hands. Overall, delegates and speakers deemed that the reality of opportunity lies somewhere between AI complementing rather than replacing our industry’s traditional MR techniques.

In our home lives we are feeling our way and still exploring the opportunities that the Amazon Echo or Google Home (amongst others) present. With more and more companies entering the AI field, it is only a matter of time until this technology starts to make waves in our industry.

As always, the Gala BHBIA Evening Reception on day one gave everyone the opportunity to smarten up and celebrate the Best of Business Intelligence Awards (more affectionately known as the BOBIs) which continue to showcase outstanding performance across the UK Healthcare Market Research scene. As a representative from THE PLANNING SHOP I was delighted that our company was highly commended for the ‘Best Business Impact Award’ with our entry in partnership with Grünenthal. Whilst we didn’t win, we congratulate BMS and Strategic North for deservedly winning this highly competitive category – and we look forward to challenging them again next year!

I was also excited about the ‘Newcomer Category’ as our very own Rawaa Shami performed well in the final. I’ve been involved in judging this award for several years and in 2019 we saw some amazing entries and talent, none more so than Katharina Krasser from Ipsos who justifiably took home the trophy.

All award finalists and winners put an enormous amount of effort into their BOBI submissions across all categories (as well as completing the projects themselves) and they deserve every credit for their achievements – especially the winners!

The second day of the BHBIA conference moved into different areas with an interesting and thought-provoking paper hosted by Kantar Health offering a different perspective (to the discussion on day one by Anthony Bennett), about patients suffering from chronic illness. The talk focussed on how the devastation of a life-long chronic disease which is marginalised by society, creates isolation, depression and solitude which patients often hide from others. The mental anguish, as well as the associated physical pain of a chronic disease was demonstrated through the eyes of a patient – one who was extremely brave in sharing her experience at the BHBIA event. The session taught us that a condition trivialised in the media and wider society could be felt by the audience through a clever use of visual and auditory aids, as well as engaging techniques by the presenters who worked well to tell an effective, clear and impactful story.

The team behind the BHBIA 2019 Annual Conference did a great job in putting together a programme that covered a wide spectrum of themes, to an audience well represented by clients (research and analyst), agency, and fieldwork companies. As the BHBIA is, by definition, UK focussed it successfully managed to leverage our relatively close-knit community by taking a risk with its content, changing venue and location, and yet sticking to their reputation of presenting important and relevant information to key stakeholders across the industry. Long may this continue!

Well done BHBIA. Here’s to the 2020 conference!

About the author

Simon Barnes is Research Director at THE PLANNING SHOP with a focus on market research in the UK, covering all therapeutic areas. He has worked in pharmaceutical market research for over 20 years across several different therapeutic areas, including eye care in an international role. He leads the Ophthalmology Business Unit alongside his UK-specific role.

Caroline Mathie discusses some of the challenges in researching rare diseases, what the broader market can learn from observing these approaches, and the role of online research in particular.

Earlier this year, England’s chief medical officer called for the ‘genomic dream’ of genome sequencing for all cancer and rare disease patients. Accelerated use of genome sequencing is allowing the identification of ever rarer diseases – a recent case in point being six children who were identified through an international database of genes and disease characteristics as having the same ASXL2 gene mutation. This answers two fundamental needs experienced by those with rare diseases; (1) knowing the cause of their problem and (2) the ability to share their experiences with others with the same condition. It also presents the industry with an opportunity to address the root cause of the disease through targeted therapies.

Background

By March 2017, 49.7% of the world’s population had access to the internet (88% in North America and 77% in Europe) – figures that are growing rapidly. Unsurprisingly, this access is a valuable tool for researching rare diseases. In Germany alone, the Journal of Medical Internet Research (January 2017) identified 693 websites containing information on rare diseases, many of them provided by support groups/patient organisations and showed that these are extremely valuable sources of information for patients and their families.

A high proportion of internet users engage with social media, including Facebook and Twitter, and there are many social media support groups for a wide range of rare and ultra-rare medical conditions. As genome-wide analyses, such as exome or wholegenome sequencing, become more commonplace, it is likely that the number of patient groups for rare diseases on social media will increase substantially.

Patient isolation:
Problem and opportunity

Having a rare disease can feel lonely, and rare disease patients are already fighting their isolation through social media, and by linking to others with the same condition. However, internet access also offers new opportunities in terms of specialist consultation, and patient education.

As new diseases are identified, ever more patients are forced to travel long distances for lengthy periods of time to specialised treatment centres. Each new disease may require a multi-disciplinary team, sparking the need for information and education for patients, carers and often other treating healthcare professionals (HCPs).

The use of the internet, to share information and for discussion, has become critical to both reduce the burden on health services and give patients the information they want at the time they want or need it. Forward-looking specialists are now looking at technological advances to enable at least some consultations with patients via video conferencing. However, though they may relieve logistical and time burdens for patients, fears have been expressed that they may be clinically risky and associated with significant technical, logistical and regulatory challenges.

Forums:
Opportunity and challenge

Patient forums are having a dramatic effect on the world of market research. They often emerge spontaneously after a small number of patients set up networks or communities to address their needs for information and to share experiences. These types of forums – and other, more established, groups – have been great tools for market researchers to gather information about the experiences of people with rare diseases, as they allow thorough observations of forum conversations. However, the forums may become hidden, as closed or invitation-only groups, if they become unwelcome targets for pharma and the healthcare industry. Thus, what could have been an opportunity for market researchers can turn into a frustrating difficulty.

Another problem with forums is that the industry itself has ethical and compliance concerns regarding too much contact with individual patients.

Nevertheless, the emergence and growth of patient forums suggest that the fabric of the rare disease market research world may have to change from ad hoc recruitment for interviews to a multiprong approach which includes much longer-term community observation.

Some solutions

All is not lost, however. When it comes to using online forums and communities for rare disease market research, we can, for example, set up our own ongoing network or community. To be effective, this requires knowledgeable and effective moderation – continuously – which is costly.

However, it does provide the ability to address recruitment issues with a specific set of patients and, more importantly, facilitates an understanding of the longitudinal journeys of different patients and their families through listening to their views over time. The community also provides the ability to identify common points on the patient journey and the needs they have and the questions they are asking at each, to build a comprehensive picture of homogenous vs diverse or segmented needs.

Less costly, but effective, is to ask to join the specific closed communities as market researchers. Some forums allow this and some do not.

Patients can also be researched using standard approaches online, which, of course, come with the usual online issues. With rare diseases, questions around patient identification are more significant, as is making absolutely sure the patient really is a patient. Guaranteed security and compliance must also be in place. Finally, if clients are given access to listen to communities, specific patient identifiers need to be removed, and if it is a short-term moderated community, any inputs or questions should not reveal the identity of patients.

Market research – a change in approach

As part of the market research industry we need to explore both a change in approach and, potentially, a change in the business relationship we have with our clients if rare disease market research is to be achieved successfully.

We also need to discuss our approach to dealing with duty-of-care issues up front, if we establish a long-term, moderated community.

Clearly there is also a role for traditional research approaches for these isolated patients using the web, such as teleweb interviews and Skype. Visual connection is also helpful to create rapport and reduce the sense of isolation.

In summary

The market research model for rare diseases is changing and to benefit from the richness of data produced by long-term patient communities, we need to think differently, set up relationships differently and consider not only the market research, security and compliance aspects, but also the ethical duty-of-care issues to sustain communities that may become important components of patients’ lives, especially genuine patients’ perspectives. Targeted utilisation of such insights can bring significant competitive advantage. Therefore, pharma companies should embrace social media listening to help them implement further actions appropriately for greater commercial success.

About the author

Caroline Mathie

Caroline leads the Rare Disease Group at THE PLANNING SHOP. After studying Medical Biochemistry, she spent 14 years at IMS Health, over 10 years as an independent, director level consultant and four years as a director at J & D Associates. Throughout her career, Caroline has had an active interest in orphan diseases and has expertise in a wide range of orphan disease conditions, including various lysosomal storage disorders.

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:

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.