By GILLES FRYDMAN

This is the first of two posts about the inspiring Patients 2.0 panel I helped organized at Health 2.0 DC. This one will explain the rationale for organizing such a panel. The second will provide a link to all the presentations and to the panelist biographies.

A while back, while he entire country was wondering if “health care reform” was ever going to become a reality, I had a conversation with Matthew Holt about the need to have a patients-only panel at the Health 2.0 conference. Matt graciously accepted the idea.

The panel was originally organized to convey, from the patient viewpoint, a few ideas, based on the following facts:

• payment reform is not health care reform,
• nobody has more at stake in real health care reform than patients,
• patients are the most underutilized resource of the health care system and,
• meaningful reform won’t happen until the patients are at the center of the effort.

Each of the 6 patient advocates that were part of the panel showed us that meaningful reform happens one disease, one problem, one patient at a time. Since most of them have had to deal with the “urgency of survival” it is no surprise they have kept a clear focus on what they are trying to achieve.

Key reality: each patient is a unique case

My experience, first as a caregiver and then as founder of ACOR, has led me to believe that when someone is first diagnosed with any medical condition or is faced with an unexpected medical problem, they all start as if there has never been anyone who has had the same medical condition.

Every patient I have met in the last 15 years, and there were more than ½ million of them, starts from the same place, square one, alone and afraid.

The panelists have all experienced this situation, first-hand. And each told us how they have faced it.

Key concept: Patient 2.0: patient-as-platform

The original term Web 2.0 was defined first, in 1999, as Web as platform. The first instance of “patient as platform” came from Doc Searls, master writer about technology, longtime advocate for open-source software, co-author of the Cluetrain manifesto, where he wrote about “markets as conversations”. In 2008, following what turned out to be a significant but unnecessary procedure he developed a serious medical problem and realized both that:

• health is personal. health care is not personal and,
• the system is built to treat templates, not the pile of combined oddities and typicalities that comprise a human being with unusual medical problems”.

He naturally concluded that in such a system the best way to fix health care is for patients to be the platform for the care they get from doctors and institutional systems.

What do I mean by patient –as platform? It is a concept parallel to the Web-as-participation-
platform paradigm compared to the Web-as-information-source paradigm of the Web 1.0 period. While the first few years of the web were filled with top-down information sources delivered statically to defined groups of recipients, the web of collaboration has changed everything, in a few short years.

The same is happening now in the world of the long tail of medicine, where system failures are generally responsible for:

• long delays in diagnosis,
• unnecessary treatments,
• lack of research funding,
• lack of biological samples,
• sub-optimal care and,
• general lack of guidelines.

Faced with such seemingly overwhelming issues people have used the Internet to develop thousands of amazingly focused communities of interest. These communities continue to be a major source of medical innovation. Many of these could be replicated, applied to all of medicine, could help empower large numbers of patients while lowering the cost of care.

Unfortunately no one knows how many communities and models have been developed. No one knows how much they share and no one has yet created a set of best practices about medical online communities. In 2006, UNC School of Public Health and ACOR created a wiki about the management of such communities but the effort has not been sustained.

Key priority: Open Science fed by Open & Transparent Data

Open data is as important in the world of online communities as it is in the world of government data sets. As noted above, a serious challenge that some of us have been trying to tackle for a few years is the difficulty in tearing down of silos across the communities of orphan diseases and unusual medical problems. Suddenly many tools, made possible by cloud computing and distributed processing, are both allowing us to analyze data sets of types and sizes that were untouchable and generating an ever increasing creation of raw data. For example, analyzing narratives is becoming much less onerous and advances are made in natural language analysis at the same time social media is provoking an explosion of data streams.

Surfacing the information, wisdom and data existing across the Internet is a key to the success of the data liberation movement. But the maximum effect won’t be achieved until the new system fully accepts that the new point of integration and decision making about individual data flows has to be the individual patient. Not surprisingly scientists, including many of the leaders of the exploding field of molecular medicine, have already started to integrate this concept into their future models. A watershed event happened a few weeks ago: the Sage Commons Congress (Share – Evolve – Cure). The post-congress remarks of Cameron Neylon should be required reading for anyone interested in why the patient-as-platform concept is of vital necessity to accelerate the growth of Open Science.

Gilles Frydman is a pioneer of medical online communities and founder, in 1995, of the Association of Cancer Online Resources (ACOR), the largest online social network for cancer patients. ACOR has served over 1/2 million cancer patients and caregivers. This post first appeared on the blog, e-patients.net.