The Role of Patient Activism And Personalised Medicine

Pioneering geneticist and Cardiologist Eric Topol, MD's book, The Creative Destruction of Medicine - How the digital revolution will create better healthcare discusses at length how medicine will inevitably be schumpetered in the coming years, and why it is vital for consumers to be fully engaged.  

Reading it was the catalyst for me establishing Healthivate and an educative process to grow patient activism here in Australia, the Participatory Medicine Movement. We desperately need it.

Why?

As Topol discusses, without the participation of consumers in this revolution, the process will be slowed. He claims, all the other forces that could come to bear - doctors, the life science industry, government, and health insurers - are incapable of catalysing this transformation. 

At the same time the democratisation of medicine is taking off. And it is the consumer who is going to be needed to make this happen.

Topol discusses there is one theme, one reason, why this creative destruction is ready to go. It is because for the first time in history we can digitize humans. Digitizing a human is determining all the letters ('life codes') of his or her genome sequence.

It is also a story about unprecedented super-convergence. It would not be possible were it not for the maturation of the digital world technologies - ubiquity of smart phones, bandwidth, pervasive connectivity, and social networking. Beyond this, the perfect storm includes immense, seemingly unlimited computer power via cloud server farms, biosensors, genome sequencing, imaging capabilities and formidable health systems. 

It is inevitable that the digital revolution will stick in medicine but how long will it take? 

And that is the issue everyone is asking and at the core of Healthivate, the bloggers conference and, tour later next year of e-patient Dave.  Can we play a small part using the crowd? 

Topol suggests it is the consumer we must empower along the way.

He points out as we all know, health is notoriously slow to adopt.

For example, the stethoscope, ubiquitous for two centuries, actually took two decades after its invention before it became a standard tool.

To penetrate the medical cocoon – to make individualized medicine real – we require a mass movement. A radical change is needed to take medicine where it needs to go, where it can go.

The same techniques in democratization that worked for example in the Middle East can be harnessed to bring this new socialized medicine. 

Instead of access to health care, this is about access to innovative technologies that make for precise medicine, the avoidance of waste, the reduction of medical and medication errors, and a fresh individual-centric approach. 

Surely this movement can be facilitated by the hundreds of millions of people on Facebook, on Twitter, in patient advocacy groups, and participating in online peer-to peer medical communities. 

We are already seeing here in Australia the rise of patient community portals, but there is a need for greater consumer advocacy and involvement in this #revolution in healthcare.

As e-patient Dave says the outcry is show me the data – SHOW ME MY DATA!

Patients are waking up and understanding ahead of the slow to adopt health segment that the convergence of medical discovery & technology must moves health towards a more personalised approach faster! We want it now! 

Healthivate will bring together for the first time some of Australia’s and indeed the world’s leading health activists as we begin the journey to build the Participatory Medicine Movement, already taking off in the U.S. It is about the empowered patient, equipped and enabled.

About The Society for Participatory Medicine

Participatory Medicine is a cooperative model of health care that encourages and expects active involvement by all connected parties (patients, caregivers, healthcare professionals, etc.) as integral to the full continuum of care. The ‘participatory’ concept may also be applied to fitness, nutrition, mental health, end-of-life care, and all issues broadly related to an individual’s health.

The Society was founded to learn about and promote Participatory Medicine through writing, speaking, social networking, and other channels