[Stitcher]

e-patients.net
because health professionals can't do it alone

Tom Ferguson coined the term e-patients to describe individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. He envisioned health care as an equal partnership between e-patients and health professionals and systems that support them.

Before Tom's untimely death in 2006, he was writing the White Paper (PDF) in consultation with the group of advisors he dubbed the e-Patient Scholars Working Group. This site continues the conversations we began with Tom.

http://e-patients.net/

[ZucchiniFlower]

Thanks, Carolyn.

I stumbled on this article cowritten by Tom which discusses the old Braintalk!

http://medicine.plosjournals.org/per...l.pmed.0020206

part of the article:

What I've Learned from E-Patients

Dan Hoch*, Tom Ferguson

Competing Interests: DH is a secretary for and TF is a director of the nonprofit organization BrainTalk Communities.

Citation: Hoch D, Ferguson T (2005) What I've Learned from E-Patients. PLoS Med 2(8): e206 doi:10.1371/journal.pmed.0020206

Published: August 9, 2005

Copyright: © 2005 Hoch and Ferguson. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

*To whom correspondence should be addressed. E-mail: dhoch@partners.org

Dan Hoch is an assistant professor of Neurology at Harvard Medical School, Boston, Massachusetts, United States of America. Tom Ferguson is a senior research fellow at the Pew Internet and American Life Project, Austin, Texas, United States of America.

As a neurologist subspecializing in epilepsy at a respected academic institution, I (DH) assumed that I knew everything I needed to know about epilepsy and patients with epilepsy. I was wrong.

In September of 1994, John Lester, my colleague in the Department of Neurology at Massachusetts General Hospital, showed me an online bulletin board for neurology patients that he had created [1]. In reading through the online messages, I observed hundreds of patients with neurological diseases sharing their experiences and discussing their problems with one another.

I knew that many patients with chronic diseases had been making use of online medical information [2]. Nonetheless, I was shocked, fascinated, and more than a bit confused by what I saw. I'd been trained in the old medical school style: my instructors had insisted that patients could not be trusted to understand or manage complex medical matters. Thinking back through my years of training and practice, I realized that there had always been an unspoken prohibition against groups of patients getting together. I had the uncomfortable sense that by promoting interactions between patients and de-emphasizing the central role of the physician, I might be violating some deep taboo.
Remarkably Complex Stories

My initial doubts notwithstanding, I found dozens of well-informed, medically competent patients sharing information on a variety of topics. I was especially struck by the many stories recounting the development of a particular patient's illness, the patient's efforts to manage it, and the resulting interactions with health professionals. By telling their stories in such elaborate detail, experienced group members could offer a great deal of useful advice and guidance to those newly diagnosed, based on what they had learned in their own online research, what they had been told by their clinicians, and what they had deduced from personal experiences with the disease.

These “patient stories” often included a number of empowering elements that set them apart from the advice patients typically receive from their clinicians: role modeling by an active, critical, well-informed “expert patient” ([1]; http://patientweb.net), comparative reviews and recommendations of clinicians and treatment facilities [2–5], and advice about how to handle the practical details of living with a chronic illness [6] (such as how to organize a home medical record, manage treatment side effects, find the best drug prices, and deal with less-than-perfect health professionals and health-care provider systems, and a wide variety of other topics relating to effective medical self-management). These extended patient narratives—no two alike—thus gave rise to an accumulated body of what my colleagues and I began to think of as an expert patient knowledge base. We concluded that these patient narratives could be invaluable resources for clinicians and researchers, interested in taking an in-depth look at the changing roles of patients and clinicians in the Internet age.
Figure 1. Logo of the BrainTalk Communities—Online Patient Support Groups for Neurology

The constant outpouring of sympathy and support that we observed in interactions among community members surpassed anything a patient might conceivably expect to receive at a doctor's office. As Richard Rockefeller, President of the Health Commons Institute, has suggested, disease-specific online patient networks provide their members with an invaluable type of around-the-clock support that he has called the “chicken soup of the Internet” [7].

Working with several colleagues, I initiated an observational study to analyze the ways in which E-patients were using this new medium. Since I am an epilepsy specialist, we decided to focus on an epilepsy support group at the site Lester had created, BrainTalk Communities (http://www.braintalk.org) (Figure 1) [8]. The BrainTalk Communities currently host more than 300 free online groups for neurological conditions (such as Alzheimer disease, multiple sclerosis, Parkinson disease, chronic pain, epilepsy, and Huntington disease) for patients across the globe. More than 200,000 individuals visit the BrainTalk Communities' Web site on a regular basis. This site is now owned and operated by an independent nonprofit group, BrainTalk Communities, and is no longer formally associated with Massachusetts General Hospital.

What we found surprised us. We assumed that most interactions would be support related, with some members describing their medical experiences and others offering active listening, sympathy, and understanding. But while such interactions were an important part of the group process, they were observed in only about 30% of the postings. In the remaining 70% of the postings, group members provided each other with what amounted to a crash course in their shared disease, discussing topics such as the anatomy, physiology, and natural history of the disorder; treatment options and management guidelines for each form of treatment; and treatment side effects, medical self-management, the day-to-day practicalities of living with the disease, and the effects of their condition on family and friends (Table 1).
A Source of Information

Much of the information that the group provided to members was similar to what I routinely provided to my own clinic patients. So I was surprised to learn that many of the clinicians caring for group members provided considerably less information, guidance, and support. And some, apparently, provided none at all. Statements such as “My provider is too busy,” “My provider doesn't care,” or “My provider doesn't seem to know about such-and-such” were alarmingly common. About 10% of the members' posts spontaneously mentioned that they had been unable to get the medical information that they needed from their own clinicians. When we surveyed members directly, more than 30% said that they had been unable to obtain all the medical information they would have liked from their physicians (Table 2). This was a primary reason for many members' participation in the group.

[Stitcher]

THE INFORMED PATIENT
The Growing Clout Of Online Patient Groups

The Wall Street Journal
By LAURA LANDRO
Wednesday, June 13, 2007
http://online.wsj.com/article/SB1181...od=rss_PJ_Main

When researchers at Harvard University were looking for a gene mutation in a group of rare blood cancers, they turned to Joyce Niblack, who put the word out to an online patient mailing list she manages, spurring more than 300 members to send in mouth swabs and bone-marrow samples.

Later, Ms. Niblack mustered 1,179 participants from 30 countries for a Mayo Clinic-led study of how the cancers, known as myeloproliferative disorders, affect quality of life. The Mayo researchers are now running the clinical-trials page on her foundation's Web site, mpdinfo.org, to keep participants up to date on developments.

Online patient groups have become an increasingly powerful force for health-care consumers over the past decade, raising funds for research and offering patient information and support. Now, as the cumulative power of their memberships grows, these groups are becoming invaluable partners to researchers and physicians searching for cures.

Patient groups are stepping up their participation in medical and public-health research and entering far-reaching collaborative efforts with researchers, scientists and drug developers. They are raising funds and taking part in studies to evaluate the impact of online patient sites. They are even conducting their own studies on side effects of medications, and working with researchers to recruit clinical-trial participants, provide DNA samples and start tissue banks.

In the case of Ms. Niblack's efforts, the results of collaboration are already apparent. The DNA gathered from the group's mouth swabs and bone-marrow samples helped researchers identify a genetic mutation that could be a target for new therapies. The finding could lead to new drugs or other substances that attack specific cancer cells without harming normal cells.

"Groups like those led by Joyce immensely serve the needs of patients," says Ayalew Tefferi, a Mayo physician and researcher who works with the group. Her foundation's Web site is "one-stop shopping for clinical trials and breaking news in research."

Other online groups are having a similar impact. An online group for patients with a rare cancer known as leiomyosarcoma sent more than 300 tissue samples to researchers at Stanford University for a tissue bank that is being used to study genetic and molecular changes that occur in the disease.

The International Myeloma Foundation conducted an online survey of patients that helped identify jaw bone deformities in some patients taking the Novartis drug Zometa, which is used to reduce or delay bone damage that may occur with the disease. Novartis now advises patients to avoid invasive dental procedures while taking Zometa.

Spreading the Word

To spur more widespread collaboration, a group of experts in patients' use of the Web just launched a new Web site and blog, e-patients.net, originally developed by Tom Ferguson, a physician who received funding from the Robert Wood Johnson Foundation and the Pew Charitable Trusts. Following Dr. Ferguson's death last year after his own 15-year battle with multiple myeloma, his cohorts completed his study, "e-Patients: how they can help us heal health care," which is available free on the site.

Co-authors of the blog include Daniel Hoch, a neurologist at Massachusetts General Hospital, and Susannah Fox, a researcher at Pew's Internet and American Life Project.

Another member of the team, Gilles Frydman, founder of the Association of Cancer Online Resources, recently launched a patient-focused "wiki" -- a collaborative Web site that visitors can add to and edit -- called lo-wiki.acor.org. The site helps consumers build and maintain online discussion groups and aid researchers who want to study such online communities or use the online groups to conduct research. Mr. Frydman, who started ACOR more than a decade ago when his wife was diagnosed with breast cancer, is also developing other sites, including one that will provide links to medical research papers for patients.

ACOR, which offers access to 159 mailing lists for cancer and other disorders, including the one managed by Ms. Niblack, had about 110,000 cancer patients and caregivers using the online communities over the past year, according to Mr. Frydman. But there are tens of thousands of such groups on sites such as Yahoo; last year, about 17 million adults, or 12% of Internet users surveyed by Pew, participated in an online discussion or group forum that helps people with personal issues or health problems.

Reaching Patients

"We can bring information about studies, clinical trials and meetings to any patient world-wide who has computer access," says Ms. Niblack, a retired patent attorney who runs both an ACOR mailing site and the MPD Foundation and has been fighting the disease for almost 20 years. "People have told me the information has saved their lives."

The University of North Carolina at Chapel Hill teamed up with ACOR for the first large-scale scientific analysis of medical online communities, publishing its findings last month in the Journal of Medical Internet Research. Using software that analyzes message content to examine the type of support provided by the groups, the researchers found that the most common topics in messages were about treatment information and how to communicate with health-care providers.

"One of the real values in the mailing lists is their role in getting patients to seek second opinions and ask questions about clinical trials," says Barbara Rimer, dean of North Carolina's School of Public Health and an author of the study.

Patients' Main Concerns

The software programs enabled researchers to study messages without identifying who wrote them. But Deborah Bell, an ovarian-cancer survivor who manages the ovarian-cancer list for ACOR and participated in the North Carolina study, says members of the group are already aware that what they are writing is on a public forum, and privacy is not a major issue. With a potentially deadly cancer diagnosis, she notes, their main concern is finding information and coping with doctors who say snide things like "and where did you go to medical school?" when confronted with questions from a patient.

Raising New Issues

Of course, the rush to link communities and researchers and the move by patient groups to conduct their own research raises some thorny new issues. While the nonprofit, patient-run online groups have no financial interest in research or recruiting for trials, some for-profit health Web sites see their online communities as a way to make money. Such sites, supported by drug-company advertising, may seek to recruit patients for drug-company clinical trials, often without going through physicians who may advise patients about the pros and cons of such trials.

Also, the research organized by online patient communities makes some scientists nervous because such efforts don't use the gold standard of randomized controlled clinical trials.

The Life Raft Group, an organization of patients suffering from rare gastrointestinal tumors known as GIST, conducts its own surveys about the side effects of the Novartis drug Gleevec, commonly used to treat GIST. The group recruits participants from among its members and publishes results on its liferaftgroup.org Web site. Norman Scherzer, a retired public-health official who started the group when his wife was diagnosed with GIST, notes that the study turned up different reactions among men and women to the drug, and was the first to report that side effects decrease over time.

"At minimum it is a surveillance system," says Mr. Scherzer, who says the group isn't trying to pass off its research as pure science. Mr. Scherzer recently persuaded Novartis CEO Dan Vasella to give the group $2 million for a research program that will recruit experts from major cancer institutions to work together to study patients who become resistant to Gleevec.

Working Together

George Demetri, head of sarcoma and bone-cancer research at Dana Farber Cancer Institute in Boston, who treats GIST patients and has worked closely with the Life Rraft Group, says that doctors need to work in partnership with patient groups. Doctors should take the self-administered surveys seriously, to understand the impact of side effects, for example.

But in cancer research, he cautions, "the challenge is keeping the patient voice in, but also staying as rigorous as possible and not being swayed by inaccurate, premature or misleading data."

[Thelma]

Lots and lots of words but when all of the back slapping is done they dumped the people at Braintalk and save for what still remains they are spouting the same old rah rah

[shiney sue]

Just wanted to say thank you for the imformation...Sue PNer

[paula_w]

Some of the posts on this page are from psyche central's Doc John

http://e-patients.net/

http://www.kaisernetwork.org/daily_r...fm?DR_ID=45558

p

[DocJohn]

Tom was a colleague and friend of mine, and I was happy to help collaborate on the e-Patients White Paper along with many others who are listed on the site.

Thanks for catching this news story, it helps keep the idea that Tom was so passionate about -- empowered patients -- in people's mind and consciousness. We're going to try and keep the e-patients.net blog going in his memory.

Best,
John