Archive for May, 2008

In memorial: e-Patients Have Lost an Important Leader

May 30, 2008 · Filed Under key people · 7 Comments

On Sunday, May 25, 2008, The Sojourner died. She was perhaps one of the most active and loved e-Patient users of the virtual world Second Life. In the real world she was Karen Gans, a stroke survivor, mother and wife. She was 57.

I came to know her through my work with patients on the Braintalk.org stroke discussion board and then adopted her in Second Life as an inspiration and mentor. She probably had the most positive attitude I’ve ever encountered. She worked tirelessly to bring people together to help each other and overcome their problems. Her main interest was stroke, and she was a driving force behind Dreams and Shockproof, sites in Second Life that have become incredible resources for those with physical and cognitive disabilities. Through “in world” challenges she helped people to exercise their minds in a supportive and caring setting. She was constantly seeking resources to help people overcome the challenges of stroke and brain injury and continued to be active on the Braintalk stroke bulletin board as well as Second Life. She was interviewed for print and radio media, and spoke at symposia. Her disembodied voice was soothing and authoritative. We often joked that she should have her own radio show.

She seemed to know everyone and everything “healthcare” in Second Life. She knew who was up and who was down, and how to help. As my colleagues and I began to develop ways to test the impact of this virtual world on health and wellness, Karen was there to advise and encourage us. I was not surprised to learn that she had both masters and doctorate degrees and had been involved, with her husband, in program development and research with handicapped children prior to her stroke. Those skills in combination with her nurturing attention to our fledgling efforts made her such an important contributor to our team. In fact, I have to admit, after the news of her death finally hit home, I felt like an orphan. I will miss her, and my heart goes out to her family and friends.

Here Comes Everybody

May 29, 2008 · Filed Under found on the net · Comment

Over on the Inkwell, our own Jon Lebkowsky is interviewing Clay Shirky, author of “Here Comes Everybody.”

My favorite quote so far: “The places where experts matter
and flourish are places where it is expertise, rather than authority
(which is to say knowledge and experience, rather than imprimatur and
access to public expression) that give them their voice.”

What can you do while you’re sitting in the doctor’s office waiting room?

May 28, 2008 · Filed Under net-friendly docs · 5 Comments

I was just at a meeting in Atlanta with Alan (who works with Atlanta based A.D.A.M. Inc.) and saw an advanced demo of their cool new iPhone tool — Symptom Navigator (iphone.adam.com). It’s a free new mobile health content tool for iPhone & iTouch. The same tool is used at UCLA and Duke Health Systems, among others – but now it’s free, quick, and portable for consumers. You don’t have to be in a doctor’s waiting room to use it, but if you have to wait, why not use your iPhone to do some research – even better, use it beforehand to learn what you can do on your own, and to help decide if you need to see the doctor.

Two Research Papers Published on PatientsLikeMe

May 27, 2008 · Filed Under patient networks · 10 Comments

Two research papers were published this month on the Health 2.0 website, PatientsLikeMe. PatientsLikeMe is arguably the only “real” health social network online today, because it lets patients share actual data that matters with one another — their personal health data. (Other supposed health social networks seem more focused on the “social” than the “health,” allowing for little integrated data sharing.)

The two research papers provide some interesting data points and insights into both the disease process itself, and how e-patients are using Web-enabled tools such as PatientsLikeMe to improve their own care.

What patients really want

May 22, 2008 · Filed Under found on the net · Comment

What patients really want: an introduction to the e-patient” cites our own Dr. Danny Sands in his video editorial on Medscape.

Health Commons

May 21, 2008 · Filed Under trends & principles · 1 Comment

Bringing healthcare solutions R&D into the 21st century: “the drug discovery process is broken,” how do we fix it? Science Commons suggests the creation of a Health Commons. The problem statement is clear:

We are no longer asking whether a gene or a molecule is critical to a particular biological process; rather, we are discovering whole networks of molecular and cellular interactions that contribute to disease. And soon, we will have such information about individuals, rather than the population as a whole. Biomedical knowledge is exploding, and yet the system to capture that knowledge and translate it into saving human lives still relies on an antiquated and risky strategy of focusing the vast resources of a few pharmaceutical companies on just a handful of disease targets.

Google Releases Google Health

May 20, 2008 · Filed Under news & gossip · 16 Comments

Google Health launched this week to the public. It is pretty much what everyone anticipated — an online electronic record that people can maintain if they wanted to. Highlights include quick information at your fingertips to your health concerns that you enter in. A user’s profile includes pretty much what everyone has seen in the prior screenshots: Age, sex, height…; Conditions; Medications; Allergies; Procedures; Test results; and Immunizations. Under each profile area, you can enter things in by hand, or choose from long, long alphabetized lists of medications, procedures, etc. Too bad it doesn’t have that “Google magic” and recognize that when you enter in a condition, you may want to step through everything related to that condition in a tutorial-like manner.

Consumers talk back to CNN’s Empowered Patient

May 19, 2008 · Filed Under e-patient stories, e-pts resources · 12 Comments

For several informative empowered patient stories, see the Comments at bottom of this post.

CNN’s Empowered Patient column, by medical correspondent Elizabeth Cohen, contains good, if not groundbreaking, advice, plus the occasional exaggeration or misconception.

For example, here on e-patients.net, Charlie Smith praised the Empowered Patient column on misdiagnosis; Gilles Frydman dismantled the tips on “savvy medical surfing”; and John Grohol critiqued the article about “how to find a doctor online.”

I think it is excellent that CNN allows reader comments, which are sometimes well-argued attacks on the content of the article. CNN also features a “From the Blogs” section, although the links are not always relevant since they are machine-generated. Bottom line, CNN is on the road to having a very good consumer resource on their site.

However, it could be even better.

The Plausible Promise of Participatory Medicine

May 15, 2008 · Filed Under reforming hc · 6 Comments

I think participatory medicine is what Eric Raymond calls a “plausible promise”: something big enough to inspire interest yet achievable enough to inspire confidence.

Reforming health care is too big for most people to grasp; creating spaces for participatory medicine is not. E-patients are already finding, sharing, and mashing up health information online. If you want to take advantage of the internet’s capabilities, find ways to make it easier for people to find and share information that you and your organization hold.

Patient Activism

May 15, 2008 · Filed Under found on the net · Comment

If you have doubts about the impact of social media on health care, please read this 2005 post on The Health Care Blog about a grandmother’s campaign on behalf of her grandson. There’s a lot of heart (and snark) in the comments.

A project of the