Regina Holliday became a passionate, powerful e-patient advocate after frustrating encounters with the healthcare system as her husband, Fred, was dying. Her mural “73 Cents” is a visual depiction of the experience. [Link to Regina Holliday's Medical Advocacy Blog]

We’re all patients at some point, and so many of our encounters with healthcare systems are difficult. It’s time to stop seeing healthcare as an impenetrable system – we’re all stakeholders, and we can have an impact. Here’s a video of Regina…

Susannah Fox has posted two sets of questions about e-patients, sent by Liav Hertsman and his colleagues at Tel Aviv University, that call for further research.

First set:
1. How would you describe the typical online active e-patient in terms of demographics?
2. In which stages of the diseases do e-patients usually need medical information the most? Why?
3. In which stages do they search for information about drugs?
4. How substantial is the e-patients’ drug search in comparison with their overall search about health?
5. How dominant and reliable is user-generated content (UGC) information in the eyes of e-patients?
6. Do e-patients who are interested in UGC also tend to cross-check the information, using professional sites or do they tend to rely solely on the UGC? Why?
7. What do the e-patients value more, specific information or general information? Is it treatment stage related?
8. In your opinion, should a health site offer diverse information or focus only on one area of expertise? Why?
9. What tools are important to have on a health site (i.e. communities, experts’ reviews, doctors’ ratings, drugs’ ratings, etc.)? Should a health site offer several tools? Why?
10. Do e-patients prefer a one-stop-shop site, where they can find every information related to health and every tool they need, or do they prefer to gather information from several sites, each with a specific specialization?
11. What causes an e-patient to return to a specific health site?

Second, followup set of questions:
1. Are there any specific studies related to online behavioral health resources that you might recommend?
2. Are there any specific studies directly related to the use of online health assessments?
3. Are there any specific studies that might support or refute the merits of utilizing online health resources for mental/behavioral health issues?

Note very useful comments below the post.

E-Patient Dave deBronkart

Dave, an online maven and communicator who consumes and shares information and builds his knowledge base with real intensity, immediately looked online for information about his disease. He joined the Association of Cancer Online Resources (ACOR), and started an online journal at CaringBridge.

I met Dave through colleagues in the e-Patients Working Group that the late Dr. Tom Ferguson formed, a group that became founders of the Society for Participatory Medicine. Participatory medicine emphasizes the active role of the patient in the process of medical treatment. This is more possible because of the Internet and the emerging, evolving abundance of information and information channels. Before, a patient’s exposure to healthcare knowledge was mostly at physician or hospital touchpoints that were inherently limited in duration. There was no great way for patients to study their conditions and find others with the same or similar conditions, getting similar treatments. If you did find and meet one or two others with the same condition, there usually wasn’t a facility for comparing notes and data. With the Internet, that’s all changed. (Tom Ferguson saw this coming in the early 90s, which is when he and I met and started talking).

I could write much more about participatory medicine and the concept of the e-patient, but I wanted to say more about Dave. Wendy White at Sirensong posts about a recent study of empowered patients. A key finding: “Personality traits seem to play a much stronger role in patient empowerment than education, income or source of health insurance.”

The study found that empowered patients have: “a high need for cognition, which means that they’re not happy with simply knowing a particular prescription successfully treats their condition, they want to know why it works. These people want to understand not only their condition but their treatment options.”

This definitely sounds like ePatient Dave, and reading it made me think of another Dave characteristic: When he found out he had stage IV cancer, Dave didn’t let it define him. He didn’t become a person who was dying, any more than anyone else. He was still Dave, confronted by a challenge, and intent on finding his way through it.

I remarked a couple of days ago that a disease seems to become terminal when it’s discovered. I might have meant that contact with the healthcare system and its treatments can kill you faster than some disease, and I think I’ve seen that before, with my father, who had colon cancer and would have could have lived well and longer had he not agreed to surgery. (That’s 20-20 hindsight, but it’s accurate.)

But I also suspect that we can think ourselves to death. I’ve come to believe that our internal conversations set a path, drag or nudge us in a particular direction. If you want to live longer, it’s probably best not to spend too much time thinking you’re dying (though we all are, of course, at least evidence suggests that’s the case.)

I’m pondering all this as I plan what I’m going to say when I speak to a patient advocacy group a week or so from now. I’m talking about patients and social media, how our web conversations and access to information are transforming medicine, changing what it means to be a patient. I think we’ll see more patients like Dave deBronkart, jumping into their treatment with both feet, learning everything they can about their conditions, finding or building communities of support and hope. This is the real “healthcare reform,” I think.

My friend and colleague e-Patient Dave deBronkart explains how misinformation from a customer service agent for Verizon led to a massive international data charge on his mobile phone bill. Verizon was stellar in their handling of the problem. Key point: they didn’t try to make him wrong or make it his problem.

I won’t try to paraphrase his post – it’s pretty rich. Read it here. He explains Verizon’s checks and balances for mitigating the problem, what he did as an empowered/engaged/activated consumer, and what the implications are for empowered patients and people dedicated to improving healthcare, where data issues are common and a big deal.

I’m part of the Society for Participatory Medicine, and we’ll soon be publishing the Journal of Participatory Medicine. (We already have a very active blog at e-patients.net.) Kevin Kelly posted a nice summary of our intentions at The Quantified Self:

The newest channel in this effort is the launch of a peer-reviewed science journal dedicated to research in the field of “participatory medicine” — as in patient participant. (Sometimes labeled Health 2.0) There is a great overlap with self-tracking and the quantified self (although by no means is all self-tracking health related), so I think this new journal will appeal to self-trackers and self-trackers to the patient-participant field.

This journal, called sensibly enough, the Journal of Participatory Medicine, will use an open source model (no fee to get the articles) which is both very much in the spirit of the paradigm, but also very future-proof (free is where all journals are headed).

My friend and colleague Dave deBronkart, aka “e-patient Dave,” was interviewed by the Boston Globe about his experience setting up personal health records at Google Health, which I blogged about last week. The gist is that Dave is an early adopter using a very new kind of system. Most hospitals don’t even have sophisticated digital records-keeping systems. The Google Health folks say “the records will improve as more precise coding language is adopted in the coming years.” Meanwhile e-patients like Dave will be pushing for better access to better information.