Go Hack Yourself; The Year that Data got Personal

The unrelenting charge by patients to be "health hackers". How will pharma respond?



This year I’ve made the same presentation about aspects of patient centricity 18 times. Fortunately, this was delivered to different audiences! In addition, I’ve been offered three jobs as a ‘Patient Centric Director’ in pharma companies. It would certainly seem that 2015 was the year when the industry decided it would transform itself into more far-reaching ‘healthcare organisations’ that could truly appreciate patients' entire needs. It’s high time I updated what I have to say when pharma are generous enough to listen, and given that I’ve just seen the first TV advert for a '23 and me' gene testing pack – which is now available at my local chemist for just £150 – perhaps my work since 2008 highlighting the patient-centric movement and the impact on the practice of medicine is complete?

Over and again I’ve been explaining to my colleagues in pharma companies that, increasingly, patients are creating their own worlds, storing their own data, offering their own theories for disease interventions and ways to better manage chronic conditions – and, wonderfully, the industry has garnered this momentum to gear up internally to match that. So is this the end for me as a Patient Polemicist? Or maybe, to steal the words of Churchill, ‘this is not the end, it is not even the beginning of the end; but it is the end of the beginning.”

Because now that we’ve established ‘patient centricity’ as an essential component of how we design, develop and authenticate the use of drugs in the real world of the patient, we should probably take a step back and a sanity check that the interpretation of what that means is aligned. Using the same terms and creating new job titles to match and mirror is a measure of good intent but is it yet good practice? Here’s a suggestion of what the good practice of patient centricity might include and a prediction of what is now expected when patients seek healthcare solutions. What is the next phase of patient-centric medicine?

1. Cured disease medicine

Society is increasingly ageless yet ageing. We still want to run marathons in our 70s, to work into our 80s and to embark on new experiences in our senior years.  This inevitably impacts on our health and we see that we expect to be able to recover from illness or live more productively with illness. The era of ‘cured disease’ is next – how will we live the active lives we want to reclaim once our cancer has been cured, for example, but we have long-term pain and fatigue that results from coming through the treatment phase of ‘surviving’ an illness. I’m writing this on World Aids Day; another therapy area where not dying anymore means that people living with HIV are developing concomitant conditions associated with being able to age with an existing condition or with the effects of having lived with that condition for 20 years plus. HIV specialists report that they are evolving into general practitioners for their older patients.

In the pharmaceutical industry, this means we have to gear up to produce healthcare solutions that help us to live with and past illness. Providing a pill is old medicine. What more will you give me pharma to help me live beyond disease burden?

2. Narrative data medicine

We are all health entrepreneurs thanks to the panoply of devices we are co-creating that generate vast swathes of physical and narrative data. It is predicted that by 2020 there will be 50 billion connected devices; the bulk of growth will be from wearable sensors that track medical data with the average person using seven connected devices to monitor their health and generate insights about both disease pathology and disease management. This means that patients will feel more entitled than ever to contribute these data and, in the words of Emma Hill, Editor of the Lancet – “every patient is an expert in their own chosen field, namely themselves and their life”.  

If pharma isn’t prepared to partner with patient-generated data, to ready itself for experienced-based medicine in addition to traditional evidence-based medicine then patients will volunteer these data to other organisations. Never has the role of the Data Scientist been more important within the walls of a pharma company. The most progressive organizations are creating repositories and building systems to aggregate and analyse these data now. Because if you tell patients in 2020 that you weren’t expecting their data you will lose the relationship equity you’ve been trying to nourish with them.

3. Ethically-eclipsed medicine

2015 was a landmark year for medical manipulations and research at a truly genetic level. The approval of mitochondrial DNA donation in the UK was a triumph of science over stigma. Critics declared this heralded the start of ‘three-parent babies’; supporters outlined the opportunity to prevent mitochondrial diseases such as diabetes mellitus, deafness, heart and liver conditions. Similar controversy raged 40 years ago with early IVF techniques becoming part of fertility medicine. Does this mean designer babies where traits or behaviors can be fixed or does this mean that we can intervene at a molecular level to eradicate certain diseases? If so, we are ethically driven to achieve this rather than prevent scientific advance. Darwinism via a laboratory is arguably just an expedited natural process?

The challenge for pharma is how to harness this controversy and regain some scientific high ground by bringing their scientists out of their commercial labs and contributing to the ethical challenges that need to be addressed. Patients want to see the world’s experts on this and given the criticism that pharma is not transparent, here is an opportunity to participate, to be visible, to lead on the big issues in medicine.

Underlying all of this is the unrelenting charge by patients to be ‘health hackers’. Living past diseases, contributing data and pushing for a new version of medical ethics are all underpinned by a determination with which patients have hacked at health, therapies and solutions. As nomenclature, ‘Health Hacking’ describes the social organization of pairing tech and healthcare experts to fast-track ideas and foster innovation. Hackathon events assemble hundreds of participants to simplify and solve health problems. This has evolved, however, to describe an attitudinal shift – what an individual can do to experiment with their own health in small, everyday ways. Some of this is a repurposing of our atavistic desire to share tips and advice but increasingly we are seeing encouragement of ‘Lifehacks’ applied to disease management. Where mindfulness  was the ‘treatment of choice’ coming into 2015, ‘go hack yourself’ will be the popular patient activity next year. I hope the pharmaceutical industry is as committed to this as patients are. Because calling your company ‘patient centric’ is a good start but harnessing the healthhackers in 2016 will require dexterity.

I think I’d better update my presentation!


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