Please note that during the festive season, The Planning Shop offices will be closed on the following dates:

24 December 2018

25 December 2018

26 December 2018

27 December 2018

28 December 2018

29 December 2018

30 December 2018

31 December 2018

1 January 2019

Best wishes for the Holidays!

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.

You think you know the patient inside-out. But do you know the patient outside-in?

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?

You think you know the patient inside-out. But do you know the patient outside-in?

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.

________________________________________

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

Download the pdf version here.

THE PLANNING SHOP on BBC Radio 4

Tune into Radio 4 tomorrow morning (6.15am Wednesday 25 July) to hear Stephen Godwin, Head of Key Opinion Leader Research at The Planning Shop, talk about financials, plans, drugs, problems and opportunities in the Pharma industry. It’s an early show, but it will be well worth the listen!

Who is the final decision maker about your health, when it comes to choosing the treatment you should receive?

Jeremy Smith, Director of Client Strategy in the Oncology Research Group at The Planning Shop explores answers to these questions.

Cancer: One of the worst diagnoses a person can receive, which affects not just the patient, but also the wider family unit, caregivers and healthcare providers.

All these people play significant roles in trying to make the patient well, but how big should these roles be when it comes to decisions, and who should have the final say? Also, what are the implications for pharmaceutical market researchers?

Before we look at the role of each stakeholder, it’s important to highlight the significant advancements in the treatment of cancer – both in the treatments themselves and in patient/caregiver knowledge.

The past and the present

In the not-so-distant past the only treatment option for many cancer patients was systemic chemotherapy. More recently, immunotherapy has significantly changed how we treat a wide variety of malignancies. Nivolumab, the first FDA approved checkpoint inhibitor was initially approved for the treatment of Melanoma in 2014. Since then, checkpoint inhibitor approvals have exploded from several manufacturers in multiple tumor types.

Whilst the treatments themselves were advancing and immunotherapy has drastically changed the treatment options, so too were the education resources that were available and targeted to patients and caregivers. This has led to the evolution of the informed patient, which has drastically changed how treatment decisions are made.

Who is the final decision maker about your health, when it comes to choosing the treatment you should receive?

How have patients become more informed?

Advertising

The first pharmaceutical television advertisement aired in 1983. That advertisement was for a prescription ibuprofen and was sponsored by Boots Pharmacy. Despite this early 1980s commercial, television advertising did not catch on until 1997 when the FDA ruled (after the 1996 Shering-

Plough Claritin television commercial) to relax the guidelines for television commercials. Television advertisement spending then jumped from $12 million per year in 1989 to $1.17 billion in 1998 and it has continued to increase ever since with spending in 2017 totaling $3.45 billion.

Although some question the ethics of pharmaceutical DTC advertising, there is no doubt that it has contributed to the increase of more informed patients and caregivers. Despite the marked increase in pharmaceutical DTC campaigns, there have been few television commercials for oncology treatments and, those that did exist, focused on supportive care rather than cancer treatments themselves. Still, the effectiveness of pharmaceutical advertising cannot be overstated. For example, prior to the Procrit DTC campaign, the drug – approved for certain types of anemia (which can cause patients to feel fatigued) – garnered little use because patients were not telling their doctors they were fatigued. The Procrit DTC campaign however, empowered patients to talk to their doctors about their fatigue which resulted in a significant increase in Procrit prescriptions.

Fast forward to 2018 and the number of oncology treatment television DTC campaigns are increasing as we see more and more advertisements for anti-cancer medications in the United States. Television campaigns currently include nivolumab, pembrolizumab and even reach beyond checkpoint inhibitors to include palbociclib and abemaciclib. These commercials are likely to be raising interest and awareness among patients and caregivers, causing them to do more research about their condition and possible treatment options.

Digital transformation

Beyond DTC advertising, and the availability of disease and treatment information, patients are increasingly able to take advantage of new technologies to access and monitor their own health information via online portals, wearable sensors and smartphone apps. As Eric Topol points out in his book ‘The Patient Will See You Now’, while we’re not fully at the point of the patient owning their medical records, the technology exists, and this reality may not be far off.

So, what does it all mean?

Ultimately, it means more informed patients and caregivers, with physicians no longer being the sole providers of medical and treatment information. Patients and family members are becoming self- educated about their malignancies and treatment options, resulting in all parties having strong ideas about the best treatment option.

Let’s look at a typical scenario

A newly diagnosed lung cancer patient goes into their oncologist’s office accompanied by their adult child.

The patient has seen the nivolumab and pembrolizumab television commercials and has completed extensive online research that has resulted in her believing that immunotherapy is the right choice for her because it provides a good chance for prolonged survival with minimal side effects.

The adult child, having completed similar research, believes that immunotherapy + chemotherapy is the right choice since it combines both treatment modalities and should, therefore, provide the best chance at survival.

The oncologist, utilizing all of his extensive medical training and experience, believes that standard chemotherapy is the best first choice in order to save immunotherapy for second line. In this scenario, who has the final say? What will the treatment choice be?

This answer will of course differ for each conversation, but it is safe to say the final decision will be mutually agreed upon. The oncologist would be remiss not to consider the patient’s wishes
and, most importantly, the reasons behind those desires. But similarly, the patient would be remiss to dismiss the wishes of their family and the extensive experience of the clinician.

What does this mean for pharmaceutical market researchers?

In the past, most pharmaceutical market research projects have been conducted around physicians, payers and KOLs with the patient perspective often relegated to a singular patient journey project. However, as treatment decisions are becoming increasingly more collaborative, it is important to include the patient and caregiver perspective in pharmaceutical market research projects to build stronger brands. Two key brand rules explain how this can be done.

1. ‘No problem, no brand’

Ultimately, the brand needs to solve a problem in order to be successful. By incorporating the patient and caregiver perspective, market researchers are better able to frame the problem that the brand will solve. Even if the overall plan does not include a DTC campaign, what better way to bring the problem to life than to incorporate the patient language and perspective?

2. ‘The truth, powerfully told’

The inclusion of the patient and caregiver perspective serves to strengthen the overall brand story. The underlying reason many HCPs enter medicine is to help people. How better to tell a powerful, motivating story than by incorporating the perspective of those patients who will be helped by the brand?

That’s great, but how do we do this?

It can be easier to include the patient perspective than one would think! Often times, KOLs are included at the start of a project in order to get the thought leader perspective on the future treatment landscape or the merits or a particular product.

Why not take a similar approach with patients and caregivers? Including a few patients and caregivers in order to get their perspective about the challenges of living with a condition or taking a particular medication can pay significant dividends. Even if the brand never plans for a DTC campaign, this additional insight will strengthen the HCP-directed communication materials. Imagine how much more powerful the HCP directed messages or concepts would be if they included the very language that they hear from the patients they are treating!

In conclusion

Traditionally, the incorporation of the patient perspective would mean a ‘patient journey’ project. While a traditional patient journey can certainly
be useful, in an age where patients are more knowledgeable and empowered, we suggest going beyond the traditional approach. Consider including patients and caregivers in other, typically HCP-only, projects as well. The patient/caregiver perspective should be incorporated when developing a positioning, identifying drivers and barriers to use, and creating physician directed messages, just to name a few.

About the author

Who is the final decision-maker about your health? | Jeremy Smith

Jeremy Smith, Director, Client Strategy

Jeremy has over 12 years of global pharmaceutical research experience, including over three years of exclusive oncology experience.

Download the pdf version here.

Rob Banyard powers to Paris and helps to raise £800,000

On Friday 8 June, Rob Banyard – Research Director at The Planning Shop – embarked on a gruelling bike ride from London to Paris as part of the DMD Dash.

The DMD Dash is charity bike ride hosted by Duchenne UK – a charity set-up to raise money to support research and the patients, parents and carers who are affected by Duchenne Muscular Dystrophy (DMD).

DMD is the most common fatal genetic disease diagnosed in childhood. The disease almost always affects boys, and they tend to be diagnosed before the age of five. Duchenne muscular dystrophy is classified as a rare disease. There are around 2,500 patients in the UK and an estimated 300,000 sufferers worldwide.

Children born with Duchenne muscular dystrophy have a fault, known as a mutation, on their dystrophin gene, the longest gene in the body. The fault means that they cannot produce dystrophin, a protein that is vital for muscle strength and function. This lack of dystrophin results in a progressive deterioration of muscle strength and function.

Rob was one of 160 cyclists who took part in the 312km ‘Dash’, setting off from London on Friday, with an overnight ferry to Dieppe, and finishing in Paris on Saturday afternoon.

Rob Banyard powers to Paris and helps to raise £800,000

Rob cycled for about six hours on day one, and another nine hours on day two after two hours sleep on the overnight ferry, and said it was a lot of hard work in the hot weather, but the sun-burnt face was worth it!

The charity is extremely pleased with this year’s bike ride, the participants and the amount of money that has been raised – about £800k and counting! Duchenne UK said on Twitter:

“We made it! 160 cyclists 300km Over £800k raised!!! Thank you so much to everyone involved.”

Rob Banyard powers to Paris and helps to raise £800,000

At The Planning Shop, we’re very proud of Rob’s achievements. Not only did he train hard, and complete the route, but he also managed to raise over £1,800 to support the charity. (Oh… and he also managed to cycle into work on Monday despite the 325km he’d already cycled at the weekend!)

Adelphi (the parent company of The Planning Shop) paid Rob’s entry fee to the race and will match the final sum of money that Rob raises and donate it to Duchenne UK.

Monies that Duchenne UK raise as part of any charitable activity are used to fund research into DMD. Read more about Duchenne UK’s research focus here.

A final word from Rob about his amazing experience:

“The people involved in Duchenne UK are some of the most impassioned and determined people I have ever met and they will end this terrible disease. I had the pleasure of sitting next to one of the leading research scientists in the UK at dinner and he believes the research is on the brink of a breakthrough. The money raised makes a huge difference with Duchenne UK funding additional research, extending clinical trials and offering support to families which otherwise would not be possible. I am so glad to have been a part of this event.’

Team members at The Planning Shop’s London office held a ‘Charity Bake Off’ today, in aid of Cancer Research UK.

Employees were set a challenge to bake a cake and bring it to the office, where it would be judged by three colleagues on the basis of look, taste and creativity.

Never ones to shy away from a challenge, team members readily accepted and arrived at work armed with a bounty of cakes! Everything from cup cakes, to Victoria Sponges, scones to strawberry layer cakes, and a traditional Russian cake (the winning entry).

Money was raised through a £3 entry fee for each cake, as well as a bake sale amongst colleagues in the office. And when we couldn’t eat another bite, the remaining cake was sold in the main reception of our building, which we share with other organisations.

It has been a fun day, where we’ve probably eaten far too much. But we’re pleased to report we have managed to raise a huge £380 for Cancer Research UK! A great achievement!

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.

Balancing cost: benefit in ‘well treated’ malignancies

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

How can the pharmaceutical industry and regulators adequately address the cost:benefit ratio of the rising prices of new oncology treatments, while still promoting R&D?

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.

Download the pdf version here.

Pharmaphorum has recently published an article from The Planning Shop titled ‘Balancing cost:benefit in ‘well-treated’ malignancies’. The article was written by Jeremy Smith, an Associate Director based in our US office.

Jeremy 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.

You can read the article by clicking here.

Please contact us on [email protected] or 020 8231 6888 if you’d like more information.

Happy New Year to all! We hope you had a good break over the festive period.

We’ve kick started January 2018 with some new joiners at The Planning Shop. Please join us in welcoming Luana Kaderabek, Rob Rawlinson and Bilal Babar to the fold!


Luana Kaderabek – Senior Research Executive

Luana has a background in Digital Anthropology (MSC at UCL) and experience in trends research, which has provided her with a deep interest in investigating the relationship between people, objects and their cultural context.

Over the past four years she has worked on trends and consumer research projects in telecoms, retail and healthcare. She has also been involved in several different qualitative healthcare projects when working at Bryter, for companies such as Novartis, Takeda and GSK. These projects covered the UK and international markets such as Russia, Latin America and Europe.


Rob Rawlinson

Rob joins The Planning Shop with a wealth of global market research experience. He was brought up on a diet of communications research, influenced by a blended consumer-healthcare world. In recent years, he has continued to expand his experience to include early asset development and commercialisation. This includes being involved in ‘go-no-go’ decisions for early phase assets through to product launches, re-positioning and biosimilar defence.

Rob’s passion is qualitative patient research, having been involved in setting up and running a patient research division in an earlier life. Beyond patient research alone, his experience spans oncology, immunology, neurology and many rare diseases.

He has a deep interest in understanding how people experience and interact with the environments surrounding them, including the place of brands. And, ultimately, acting as a strategic advisor to translate this into something meaningful for clients.

Rob’s other passion is creativity; both in the research approach and in what he delivers to clients, often advocating a beyond PowerPoint solution such as video, booklets, and infographics.

Rob has a Masters in History and Cultural studies from Royal Holloway, University of London.


Bilal Babar, Associate Director – Statistician

Bilal is a statistician methodologist with experience in range of advanced quantitative methodologies. He is skilled in selecting, designing and analysing appropriate quantitative studies. The types of research that excite him most are demand assessment (including a variety of conjoint and trade-off approaches) and segmentations where he has developed many new quantitative offerings in his previous roles in pharmaceutical healthcare research agencies.

Bilal studied statistics and market research in his Bachelors in Business Administration (BBA-hons) degree. Bilal has also completed an MBA from Cardiff Metropolitan University

He is excited and looking forward to joining The Planning Shop.

Welcome to THE PLANNING SHOP Luana, Rob and Bilal!

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.

Millennials searching for a higher purpose

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.

Healthcare marketing to millennials: six key insights

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.

Healthcare marketing to Millennials: Social power of online advocates

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 Smith, Innovation Director, THE PLANNING SHOP

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.

Download the pdf version here.