Tag Archives: patient-centric

Seizing Hope – An Anthropologist’s Perspective on a Movie Screening

Last night, I attended a screening of ‘Seizing Hope – High Tech Journeys in Pediatric Epilepsy’ at the Peter Gilgan Centre of Research and Learning at the Hospital for Sick Children in Toronto.

The evening was remarkable through the presence of a girl with epilepsy and her mother. I noticed them right away when I came into the auditorium and saw the girl in her wheelchair. I thought “Ah, a patient” and walked on.

Being an anthropologist by training and a market researcher for Canadian pharmaceutical companies and someone who does not spend much time in academic settings any more, two things struck me as remarkable in the set-up of this event:

Everyone was wearing a mask – “of course, we’re at a hospital” I thought.

Everyone in the auditorium had a microphone on their desk and the house lights were on the audience, whereas none of the panelists upfront had a microphone and no lights were illuminating them. I wondered whether this was a glitch in setup or reflective of the medical professionals’ attitude – “it’s not about me, it’s about the patient”.

The movie ‘Seizing Hope – High Tech Journeys in Pediatric Epilepsy’ which follows four families in their journeys leading up to and after getting a neurostimulator device implanted in their child’s brain, was both informative and touching. The most touching moment for me was when one of the mothers describes how her then four-year old daughter first got epilepsy. She lost the ability to walk, talk, deteriorated back to baby status and no longer recognized her as her mom. Any parent can feel the heartbreak that that entails.

I had seen an epileptic seizure before, but I did not realize the profound impact that the disease has on those affected, including families. This thoughtfully and gently composed movie is highly effective at communicating this. In addition to introducing new technologies that have the potential to help people with drug-resistant epilepsy, it really brings home the dire need for treatment and the equally important need to support families in their support of the patient.

However, real life is an even more effective teacher than any movie can be.

As the mother in the audience who had been in the movie was invited to the front to be part of the panel discussion, it was clear than her daughter also wanted her place in the spotlight (which wasn’t actually turned on, as mentioned before…). She walked up to the moderator and said hi, …and continued to make comments to her mom, the doctors she knew, her family members in the audience, and did not want to sit back down and listen. While the movie had talked about the impact on families, watching the family try to enable the panel discussion to move forward drew me and the other audience members right up close and into the experience.

But that was not all.

Towards the end of the event, when the girl had actually sat back down with her grandmother, she had a seizure. Her family, including her younger brother, immediately sprang into action, assisting her and dealing with the situation like the experienced support team that they are.

While most of the audience members turned to watch the event, I directed my gaze towards the pediatric nurse, neurologists, and neurosurgeons at the front. Clearly, they were torn between their assigned roles as panelists to wait and continue the discussion and their instinct as healthcare professionals to jump in and help. Several got up and sat back down again, struggling with the decision. A couple called out ‘Are you ok?’ to the family. Finally, one, the moderator, walked over and assured himself that the family was ok and able to cope on their own with what was occurring.

This cluster of family members around the girl in peril – their expert handling of the situation, from the oldest to the youngest person – this brought home more than anything to me how epilepsy affects lives.

Takeaways:

  • Doctors wear many hats. They are first and foremost caregivers, focused on making patients feel better and keeping them safe. They are also scientists, exploring new frontiers of medicine. And finally, they are advocates. It became clear in the panel discussion that access to new medicines and new technologies can be a huge issue and doctors play a role in advocating to governments and sometimes even to the manufacturers of these medicines and devices to make them available in Canada.
  • A film about patient experience is a powerful tool for education and advocacy. The four families whose lives were shown in the film had requested that it would strike a balance between authoritative voices and compassionate portrayal, and it did. It was informative about the new technologies and the ethical dilemmas inherent in them, as well as successful at showing the profound impact of the disease and at fostering empathy for those affected by it.
  • First-hand experience is even more powerful than a movie. Watching the girl interact with her doctors and nurse, observing their responses, seeing the concern in their eyes when the seizure happened and witnessing the family’s rush to help was something that a lay person like myself is unlikely to forget.  

Why was I at that event? Just a desire to see something new, after a long pandemic-induced hiatus. I have done some market research in neurology in the past, and would like to engage more with companies in the field, so I thought it would be a good idea to get some more exposure to an area within neuroscience.

What did I learn that could benefit my clients? Patient voices can be powerful advocates for bringing new medicines and technologies to Canadians, but physician voices also play an important role.

Advertisement

How pharma may or may not win in a digital world

Healthcare is going digital at a rapid pace. A recent article by McKinsey & Company titled ‘How pharma can win in a digital world’ outlines emerging trends in digital health and how pharma needs to evolve to keep up with the times.

A number of predictions in this article are, I believe, misguided and reflect a common, but incorrect understanding of the potential of digital in health.

Digital health collage 2

Prediction # 1: “Patients are becoming more than just passive recipients of therapies”

Patients have certainly become more knowledgeable about their own health and about available therapies. And hopefully, health-related apps are helping people lead a healthier lifestyle and stay on top of their medical conditions and medications. However, patients have never been passive recipients of therapies. Patients have always had the choice of taking or not taking their pill, cutting it in half, skipping a dose, forgetting to take it, taking it with food when they are not supposed to etc.

Having served pharmaceutical clients for more than a decade, I have frequently observed that it is difficult for someone within the industry to understand that the medicine they are producing is not the be-all and end-all of a patient’s existence. Life is a busy thing. You work, you look after your family, you eat, you entertain yourself, and you may have a health problem that benefits from taking a medication. The act of taking a pill consumes a fraction of your time and attention. Medicines for health issues that are non-symptomatic may be forgotten because the patient does not feel sick. Medicines for chronic, life-threatening conditions may have suboptimal compliance because the patient would rather not be constantly reminded about his or her precarious situation. For acute conditions, compliance wanes as soon as the patient feels better. Side effects deter patients from taking their pill, etc. Compliance would not be such a huge unsolved problem for pharma if patients were ‘passive recipients of therapies’.

Prediction # 2: “Patients will be actively designing the therapeutic and treatment approaches for themselves with their physicians”

I have read this type of statement numerous times in articles about the future of pharma. Perhaps I am lacking understanding of what’s technologically possible nowadays, but for now let’s assume I have a pretty good handle on it. Designing a pharmaceutical product is an extremely specialized and complex process that involves scientists and labs. A chemical or biological compound with certain properties is created to address a specific health issue, and this compound cannot be easily customized. Rather, it is created and then subjected to rigorous testing, costing hundreds of thousands of dollars (or more), and if it does not hold up to scrutiny, then it’s back to the lab for more experiments and tweaking before another round of expensive testing resumes.

Physicians who spend most of their time in clinical practice do not design therapeutic and treatment approaches. They are merely the retailers of those approaches, acting as consultants to their patients and advising them which approach may be best suited for them. And patients will not be actively designing their own therapies unless they are experimenting with mixing pills and brewing up concoctions of their own invention (caution: don’t try this at home, kids!).

With substantially increased access to information patients can play a much more active role in selecting treatments, but they will not design them.

alchemist-300px

Prediction # 3: “Medicine will be personalized to address individual patients’ needs” (not in McKinsey article, but can be found in many other publications on digital health).

The move towards personalized medicine is certainly well underway. However, it does not mean that a therapy will be designed on the spot for the individual sitting in front of his or her physician. Again, the physician is the expert mechanic using existing wrenches and bolts to fix the car. The inventor who comes up with new wrenches and bolts does not deal directly with the customer whose car broke down.

Tools

Personalized medicines are medicines that target issues more precisely than was previously possible. While physicians used to set off a grenade to blast away your breast cancer, and half of your body as well, they now use a precision rifle that locks in on the malignant area and eliminates not much else. And depending on your genetic profile, there are different bullets that are most effective for your particular type of problem. So the array and precision of weaponry in the physician’s arsenal has increased vastly, and affordable genetic tests have contributed to better targeting of the weapons. But none of these things are designed on the spot, while you’re sitting in the examining room, nor will this be possible for a long, long time.

Explanation: Poor understanding of digital vs. physical contributes to common misperceptions

How do these misconceptions come about and why do smart people write these things?

The past five to ten years of our experience of living in a digital world have greatly impacted our beliefs in how easily things can get done and our feeling of agency. Want to customize your new car? Just click on the features that you want – sunroof, heated seats and the colour red – and you can get this exact model without any effort on your part. Select the perfect outfit? Choose the style, colour and size, and get it delivered to your doorstep the next day. Don’t like part of your video? Just delete and replace.

The ease of these digital experiences has gotten us into the mindset that things can be designed instantaneously, delivered rapidly and modified on the spot. We rarely think about the physical realities that enable our digital experiences. To give you the experience of ‘designing’ the perfect outfit for yourself, the maker has to come up with new styles to attract your desire, run efficient manufacturing to put the piece together with acceptable quality and at an affordable price, ensure the supply chain to enable the manufacturing, build in agility to adapt supply to demand quickly, and create a distribution system to bring the piece to you. All of these things are not done through click of a button, but through the hard work of setting up systems, negotiating agreements, fine-tuning machinery and materials and implementing physical processes.

It’s the same for pharmaceutical products. They are chemical compounds, after all.

Digital opportunities

However, the potential of digital solutions to transform the way we care for ourselves and the way healthcare is provided to us is undisputed. From life tracker apps that help you remember to take your pills on time to smart contact lenses that monitor blood glucose levels without pricking your finger to ingestible sensors that give you peace of mind that your schizophrenic brother has actually taken his medication, digital interfaces, algorithms and sensors can deliver great value to the patient.

The question is how this translates into business opportunities. Many people believe that pharmaceutical companies should transform themselves from being “a products-and-pills company to a solutions company” (see McKinsey & Company article). The idea is to not only provide medicine to the patient but also digital tools for monitoring of the patient’s condition, for communicating with the patient’s circle of care, for scheduling and reminders, for supporting rehabilitation after events and for outcomes tracking. From a patient perspective, this could certainly be a valuable offering. From a business perspective, the value proposition is less clear.

First of all, pharma companies do not typically have the expertise to develop digital solutions in house. Some form alliances with tech companies. Novartis and Google are developing smart contact lenses for people with diabetes and are scheduled to start trials this year. Otsuka and Proteus Digital Health have teamed up to embed a digital sensor into a schizophrenia medication to track compliance, and have submitted the first digitally enhanced new drug application to the FDA. J&J has set up a series of incubators and rewards startups for coming up with interesting ideas in digital health. Merck sponsors health hackathons.

What does the pharmaceutical company get out of this? Will physicians choose their medication over competitive products because it comes with a digital value add? Is the digital component just another cost factor that is necessary to stay competitive these days, or is there a revenue model somewhere? It seems that there is currently a climate of experimentation without a clear business model path ahead, not unlike many other areas of digital development.

In crowded markets with little product differentiation, it is possible that the companion app could become the deciding factor in recommending one drug over the other. However, it is hard to imagine that it would play any role if there were differences in efficacy or side effect profile between the compounds. A tricky little question is also what to do with patients who need to switch off one product and go to another. Should they be denied continued usage of the app?

To be truly solutions providers, pharma companies would need to be structured differently, around disease states, not around products. It would make more sense to form a company that is, say, a ‘cardiology broker’, offered great digital tools to manage a variety of cardiologic conditions and give patients access to the full gamut of cardiology drugs available. The sales reps for this company would not overtly or covertly ‘push’ one or two drugs, but they would advise physicians on what is new in the field and impartially discuss the merits of the different options. There are some attempts of pharma companies to become leaders in a therapeutic space and assume the role of expert provider – for example Roche or Novartis in oncology, where both companies have a large product portfolio. However, by and large, this type of business model does not apply to how pharma companies are organized and how they make money currently. It would be more applicable to private payors, and we see some organizations in the U.S. moving in this direction.

Low-hanging but sour fruit

The obvious area where digital tools can be used very effectively to drive engagement is patient-related. Arguably, a more engaged patient will likely be more compliant and stay on therapy longer, resulting in immediate benefit to the bottom line.

However, while many companies try to be patient-centric, any direct engagement with a patient carries the risk of an adverse event report with it. While adverse event reporting systems have been set up to keep patients from harm, unfortunately, reporting requirements are ridiculously broad. Nobody is keen on generating massive amounts of adverse event reports for their drugs. So digital engagement of patients has to be done with all sorts of caveats to reduce the risk of learning about an adverse event. Some companies stay away from direct engagement with patients altogether for that reason; others have taken the plunge and struggle to come up with creative ways around the problem.

Another challenge in engaging with patients through digital tools and platforms is finding appropriate engagement formats for particular audiences. A platform that has been designed to help kids with pain through gamified challenges and ‘levels’ may not be the right approach to engage a 70-year old cancer patient. Very little testing and research has been done to date to find out what tools best support patients with certain conditions. The key here is to be open to a multi-platform approach. While a game may be great at motivating one audience, a combination of text reminders and phone support may be best suited to keep another audience adherent to their treatment. Unfortunately, many of the vendors that design patient engagement tools on behalf of pharma are either all digital or not digital at all. What would be needed is a new type of vendor who can pull together various types of tools and customize them for a particular target patient population.

Low-hanging sweet, sweet fruit

One area where pharma could employ digital innovation easily and with sustained impact is in the way companies communicate with physicians. While almost everyone has switched to iPads for detailing over the past few years, pharma companies (in Canada, my home turf) still have limited understanding of how digital can be used to improve access and deliver value to physicians. Knowledge about different forms of digital engagement is lacking in marketing departments where people think Twitter and Instagram are for self-absorbed teenagers with too much time on their hands. Also, there is a feeling that digital is not important to the physicians who are core to the business. However, as one year after another go by and younger physicians become key opinion leaders and high prescribers, companies may find that they have missed the boat in establishing a digital rapport with these individuals.

Only recently have some companies started to think about conducting media audits and finding out from their core target how they use digital tools and what might be of value to them. Putting some effort and resources into understanding the myriad of different ways digital can be used, and physician preferences in this regard is relatively simple and will almost certainly have a payoff within a five-year timeframe. There will likely be some resistance from the sales folks who tend to see alternatives to face-to-face engagements as a threat to their position. However, I believe that the 21st century sales rep needs to be an expert in offline and online relationship building. Pharmaceutical companies need to figure out how to integrate different forms of digital and non-digital engagement optimally, and create internal structures and tools to maximize value for the customer.

Cartoon

McKinsey & Company article source:

http://www.mckinsey.com/insights/pharmaceuticals_and_medical_products/how_pharma_can_win_in_a_digital_world

Image sources:

‘Digital health collage’: Made the image myself

‘The alchemist’: https://openclipart.org/detail/222415/alchemist

‘Tools’: DeWalt DEWALT DWMT72163 118PC MECHANICS TOOL SET on http://toolguyd.com/dewalt-ratchets-sockets-mechanics-tool-sets/

‘Cartoon’: I’ve seen this cartoon on the web many times, but don’t know who made it originally. I’ve copied it from https://effectivesoftwaredesign.files.wordpress.com/2015/12/wheel.png?w=640

 

What should patients know about their disease?

A recent survey by the Dana-Farber Cancer Institute showed that many women who had surgery for their breast cancer did not know basic facts about their own tumour, such as their HER2 status, their ER status, their tumour stage and grade. @DanaFarber

The lead author of the study, Dr. Rachel Freedman, expressed surprise and concern at these results.

http://www.dana-farber.org/Newsroom/News-Releases/many-women-lack-basic-understanding-of-their-breast-cancer-study-finds.aspx

Why should patients know or care about these things? I have been immersed in the field of healthcare and pharmaceutical market research for more than ten years, but when it comes to my own health, I find I am not really interested in learning about the intricate details of my ailments.

Professionally, I often talk with physicians who make treatment decisions on life-threatening diseases and marketing executives from pharmaceutical companies who promote therapies to treat these diseases. Both of these groups focus a great deal on the minute differences between this drug and that, between different genetic mutations and cellular targets and markers that guide therapy choices. This knowledge is essential to their livelihood and their job. Should it be essential for patients as well?

Let’s draw an analogy to other areas of life.

When my car breaks down I bring it to the mechanic. What I am most interested in is: A) How serious is it? B) Is it fixable? C) How much will it cost to fix it and how much time will it take? I believe the mechanic to have all the knowledge about the different parts in my car and the tools that are needed to fix them, should they break down. I trust my mechanic to give me an honest assessment of the damage and the different options for repairing it (yes, I have an honest one). I don’t need to know anything else. Why should it be different for medicine?

DSC_0651

Or here’s another one:

When I decide whether to buy an Apple smartwatch or a Samsung Gear, I base my decision on things like what apps they offer, how the screen is laid out and which smart gestures they support. How the people at Apple or Samsung get the watch to have these features is irrelevant for me. All I care about is what I can and cannot do with the watch. And whether it looks cool. And how much it costs.

Samsung Gear S

And now back to medicine:

Is it fixable or will I die (soon)? How long do I need to take this therapy for? Will it make me nauseous? Does my insurance cover it? Will it prolong my life? How much of a hassle is it to take it? These are the types of questions that are relevant for a patient.

That’s hard to understand for someone who is focused on the science of medicine. But healthcare is more than science. Extending someone’s life or halting disease progression are only surrogate endpoints. The real endpoints are enabling patients to lead the life that they want, how they want it. These endpoints are, of course, immeasurable.

The Role of Motivation in Patient Engagement

As Dave Chase @chasedave recently stated The most important medical instrument is communication, and Patient Engagement is the Blockbuster ‘drug’ of the century. The idea is that by engaging patients to become more proactively involved in the management of their own health, better outcomes can be achieved, and generally at a lower cost to the healthcare system (compared to expensive tests, procedures and medicines).

New technologies make it easier to engage patients – for example via online portals, health apps, personal electronic health records, portable monitoring devices or a clever combination of these tools within a new care model. Clearly, when the generation of texting, tweeting, vining, instagraming twenty-year olds turns fifty and start their decent into chronic illness, resistance to digital, mobile, sharable health tracking and communications technology will no longer be an issue.

Remains the issue of motivation. The people who continue to supersize their burgers and fries, do they lack awareness of the health impacts of excess weight? The schizophrenic who skips her pill because it makes her head feel fuzzy, has she not been educated on the dangers of messing with her medication regimen? Will improved communication with a healthcare provider convince my uncle to stop smoking?

Yes, there are those who suffer from inertia, who are uncertain about the right way forward or who find it hard to fit taking care of themselves into their busy days. These patients will find it helpful to be supplied with tools and supportive healthcare providers who make it easier for them to look after their own health. These patients are the low-hanging fruit for the new care models.

And then there are other people. People who will not download the app. Who will not sign up for the e-newsletter. Who do not want to be called by their pharmacy to remind them to refill their prescription. Some people will continue to do dangerous, unhealthy things because they want to. It makes them feel good, at least momentarily. Some do not want to face the realities of getting older, of their failing bodies, loss of beauty and loss of agility. Some are comfortable with the thought that this is all inevitable, and do not feel inclined to take action. Some are looking to their doctor for the quick fix, just make it go away, I don’t want to bother with it.

PtEngageUSED

Motivating people is a tricky business and tech tools are only going to do part of the work. What motivates patients to take care of themselves? Pain? The desire to live longer? A feeling of obligation? Because your mom told you to? Peer pressure? Because it is cool? Fun? Because it makes you look better?

Also, doesn’t motivation change over the course of one’s life? What motivates a twenty-five year old to track his weight loss with a health app and what motivates a seventy-year old to continue his androgen deprivation therapy would likely be very different things. Capturing the Show Me The Way segment of patients with new patient engagement tools will be easy and rewarding. Addressing the Maybe Later and the No Way segments will be much tougher, and cracking the motivation nut will be essential to make it work.

Personalized, patient-centric medicine

Much has been published lately about personalized medicine. The other, similar buzzword is patient-centric.

It seems to me that in these terms, consultants and trend-spotters mesh together two very different ideas, each with associated with different strategic implications.

Personalized medicine in the sense of using biomarkers and genetic information to target therapies more specifically to patients who are more likely to respond to them is an approach that many pharmaceutical companies are embracing.

However, in this context the patient as a person has very little relevance for the R&D process and the commercialization of new products. What he or she feels, thinks, believes or does is unrelated to the peculiar genetic mutation that makes him or her a good candidate for a specific drug.

The second trend, namely focusing on the patient as a person, does not usually play a role in drug discovery. Pharmaceutical companies commonly find themselves in the situation that their compound is the third or fourth me-too agent to market with little incremental benefit. Identifying and targeting a specific patient with distinctive attitudes, behaviours and needs can be a successful marketing strategy in an undifferentiated market.

And while some companies may strive to bring both approaches closer together – understanding the patient as a person and developing new molecules that meet the patient’s specific needs – this is far more difficult to achieve in pharmaceutical product development than in the area of consumer goods.