Patients 2.0 – the growing demographic of networked patients

In a ballroom at the Hilton Union Square in San Francisco on October 6, 2010, several hundred people shared ideas, debated, and painted a multi-faceted picture of the NewPatient: the networked patient.

The meeting was convened, in “unconference” style, in conjunction between the Health 2.0 Conference and Gilles Frydman, founding father of ACOR, the Association of Cancer Online Resources. Gilles knows a lot about the NewPatient: he’s organized people focused on cancer for over 15 years through his organization, which has helped tens of thousands of health citizens connect to clinical trials, researchers, information, and each other – all seeking to cure virtually every form of known cancer, and identifying forms unknown.

As Jeremy Shane of Health Central kicked off the meeting, he set the theme: this session was, “Not Meet the Parents, but Meet the Patients.” As Health Central sees 14 million visitors to its sites on a monthly basis, Jeremy has some knowledge about the NewPatient, too.

What makes an engaged patient, he has learned, isn’t based on a demographic such as age or gender or socioeconomic status, per se; what makes an engaged patient is a desire to understand her situation and a driving curiosity – in sum, a “need for cognition and understanding,” Jeremy contends.

Jeremy notes that the average search on health has grown from 4 words just a couple of years ago to 6.5 words today — a longer tail – because people are describing their unique situation and they want an answer to their own needs.

Nine people – patients, experts – shared their perspectives with specific communities and personal histories. The goal of the sharing was to seek commonalities, shared principles, and learnings. Dr. Alan Greene, both a patient and provider, shared the vision of participatory medicine, recommending that every clinician convene a Patient Advisory Council to inform and shape their practice.

Regina Holliday, of the Medical Advocacy Blog and 73 cents/21 days fame, passionately talked about the NewPatient’s need for accessing their own information.

Ian Eslick of the MIT Media Lab told the group about a fast-track approach for clinical research enabled through linking an online community of patients with researchers around the globe.

James O’Leary of the Genetic Alliance works with 1,000 genetics organizations, inspired early by his mother’s diagnosis with lung cancer when he was a teen. His passion is driven by the objective of how to get information out of the doctor’s office to patients and their families – “we need to mix services, support, and advocacy together – we’re getting the care model wrong,” he recognizes. “It should be a continuous process of care.”

Amy Tenderich, pioneering health blogger and advocate for people with diabetes, knows a patient needs 3 things: a support network in the company of other people walking in their shoes; dynamic education about their illness, ongoing; and, good tools that address “real life issues” of their illness. She critiques that health care is still very supply-side driven with little integration of the demand-side –that is, the patient’s point-of-view and input into the design of products and processes.

Nicole Boice represented the children’s rare disease community, which advocates for people who are sick but, condition by condition, have very few numbers among them. Her vision is a big tent that unifies people to leverage and empower. Currently, there aren’t best practices to follow and little opportunity to share information due to the small numbers challenge. The silos need to be broken down.

Gary Wolf of the Quantified Self movement is, as he puts it, “dedicated to the idea that there is meaning in personal data in health care.” He sees a large cultural shift – the notion that there is a supply chain of data with the patient at the front end with value added along the data-journey. Gary wants to reverse that data-supply chain so that people benefit from the cognition of their own data.

Sharon Anderson is a patient with a rare sarcoma – 4 in a million receive her diagnosis. She is an example of someone who is part of an online network – finding “the beauty of online support network at ACOR. We research together and find trials, compare treatment – sometimes we knew what was going on in a trial before the researchers.” She and her peers shared their tumor tissues with a researcher at Stanford, who ultimately amassed over 400 samples and has been deeply diving into the information generated by this rich tissue bank. He’ll be matching up specific tumor types to specific drugs, getting to the vision of personalized medicine that’s been an elusive Holy Grail.

Dave DeBronkart, e-Patient Dave, added to the conversation with his own personal story of patient empowerment, in partnering with his clinicians and then going public with his story. “Let patients help is my new message,” he added to the mix.

Health Populi’s Hot Points: The common theme for NewPatients is data: accessing it, understanding it, and acting on it. There are several lenses on data that came out of the dialogue:

Data must be accessible: Hugo Campos, attending the meeting as a patient, is managing heart disease and received an implanted defibrillator. His frustration is that the medical device transmits lots of data to clinicians via wireless networks, but Hugo does not have ready access to that information – and desperately wants it. This remains elusive, but Hugo is engaged in discussions with medical device manufacturers, clinicians and researchers to get to his personal heart information.

Data must be actionable: Amy Tenderich points out that, “everyone thinks the Holy grail is for diabetics is to have millions of glucose data points, but nobody is telling people what to do with the information.” Amy says it’s a myth that people will tell you what to do once you have data. There needs to be education as to what the data means for me and what actions I can take. Gary Wolf added to this discussion, identifying “an illusion people have that there’s an answer. This is part of the shift we’re going through that there isn’t someone at the end of the telephone.”

Data can make you dangerous…in an empowered sense. Amy talked about the case of continuous glucose monitoring, which is an FDA-approved technology but not universally covered by payors. A young woman in New York, having learned about CGM but being denied coverage by her payor, launched a campaign online among people – bloggers, parents with children with Type 1 diabetes – amassing an online petition, linking with advocates, and ultimately creating, “a voice and rallying cry that didn’t exist before,” Amy described.

Data must have an ROI for the Patient. The question of return on investment was raised: as in many health care venues, “who’s ROI is it, anyway?” In many cases, the stakeholder who makes an investment of time, money, or effort doesn’t amass the return. Data is personal – so it should come in the format and via the medium/channel that people like — graphic, text, numerical, whatever. A related aspect of this is input – it must be seamless and simple for the data to get recorded, tracked and analyzed. Expecting a patient to physically record numbers into a database hasn’t worked. The new Withings scale is an example of a medical device (a weight scale) that automatically records and communicates weight to a database – and can even transmit to Twitter (although the jury is out on just who would like to share their weight on a public network – a topic for another post – for now, look to the early adopting Quantified Self proponents).

Connect the unconnected. Finally, the NewPatient is the Networked Patient. Many people remain un-connected to a network, the group observed. But some people are indeed connected to a network – offline. I noted a group of empowered women in a church in North Philadelphia who support each other in managing their diabetes, connected by their church and spiritual community. We must remember that there’s a health ecosystem that largely is outside of traditional health “care” touch points: grocery stores, schools, workplaces. There are data coming out of these interactions as well; the Robert Wood Johnson Foundation’s work on Observations of Daily Living will have lessons to guide these forms of data that won’t necessarily come out of medical devices.

Gilles Frydman concluded that, “data will transform everything we do in medicine – besides the quantifiable data, there are also all the narratives. Here we have people who have told stories. It’s very important for the future of medicine and health improvement to always remember we must look at data in perspective with narratives, and the reverse.”

“You are not alone,” Gilles said. This is the first reaction people have when engaging with the ACOR community. This will eventually be the common experience for the NewPatient – for Patients 2.0.

8 Responses to Patients 2.0 – the growing demographic of networked patients

  1. Lisa Emrich October 9, 2010 at 2:27 pm #

    Thanks for reporting on Patients 2.0. Sounds like a fantastic day with lots of great discussion and insights. When I first started online with my blog (years after previously participating on a disease-specific patient forum), I didn’t anticipate the level of empowerment and personal rewards I would gain from it. I believe most people in the general public do not likely know how this type of connection is so very beneficial.

    One little thing I’d like to share in regards to taking control of one’s health is a simple blog I started on the HealthCentral platform. It was part experiment and part serious desire to make a change in my health…..specifically my weight. Who knew the power of putting it all out there?

    First post on January 4, 2010: 271.6 lbs
    Recent post on Sept 29, 2010: Obesity and Healthy Behaviors: Where do you find inspiration?
    Losing over 40 lbs in less than 40 weeks, with a little help and support from friends and strangers. Perhaps putting it (weigh-ins, food diaries, whatever) all out there is truly a good thing. Networks really do make a difference. :) Thx

  2. Dan Munro October 9, 2010 at 10:05 pm #

    Great summary – thanks for putting this together! Wanted to be there (especially for this event) – but couldn’t make it – so looking for as many summaries as I can ;-) Thanks again. :dm

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