Is the future of health patient-driven? | Opensource.com

Is the future of health patient-driven?

Posted 12 May 2011 by 

Lori Mehen (Red Hat)
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People often share more about their health and medical experiences on Facebook than they do with their own doctors. They talk about their experiences with illness, their symptoms, the medications they're taking, the side effects, what works, what doesn't, even various treatment options.

It turns out this online health chatter can be a lifesaver.

In January 2007, a man named Dave deBronkart was diagnosed with Stage IV, Grade 4 renal cell carcinoma (kidney cancer). When his doctor discovered a spot on his lung (tumors that had developed from the metastasized kidney cancer), he told Dave to "go home and have a glass of wine with your wife." He researched his condition on reputable websites, official sources he felt he could trust. And what he learned on those sites was that his "prognosis was poor," his "outlook was bleak." His survival time at diagnosis was just 24 weeks. He had tumors in both lungs, several bones, and muscle tissue.

Looking to his doctor for more information, he was prescribed a patient community, acor.org.

It was on acor.org that Dave realized that patients themselves are the most underutilized resource in healthcare. On this community site Dave learned about an experimental course of treatment using high dosage Interleukin. He learned what providers near him were doing this and their phone numbers, information he wasn't able to find on any of the government-sponsored or approved websites he trusted. He concluded that only patients know best what other patients want to know.

Dave participated in a clinical trial for the powerful, but severe, high-dosage Interleukin-2 (HDIL-2). His last treatment was July 23, 2007, and by September it was clear he’d beaten the disease.

Since then, Dave has joined and promoted the e-patient movement, where patients who are equipped, engaged, empowered, and enabled share their own experiences with other patients to help them lead their own courses of treatment.

Another group, the Society for Participatory Medicine, is a "networked group of patients who have shifted from being passive passengers to responsible drivers of their health."

This trend is gaining even more momentum, as Pew Internet & American Life Project shows that beyond checking email, health-related web searches are one of the most popular online activities. The Pew study showed that approximately 80% of web users in the United States actively research health topics online.

And now, businesses are starting to mine these communities and their online chatter to identify trends in symptoms, outcomes, effectiveness, and complications. PatientsLikeMe is even beginning to use these online communities to identify patients for clinical trials.

Perhaps the future of health will greatly benefit from this information sharing movement. It is empowering people through community to improve their own healthcare, and in Dave's case, is quite literally saving lives.

 

Related health reading

Can social communities transform clinical trials?

Sharing information to improve your health

Can open source save US health care?

 

 

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4 Comments

gscarborough
Open Minded

The problem with sites like this is the mining of information. Insurance companies can use sites like this to deny coverage to people that they wouldn't normally be able to find information about. Medical information is suppose to be private for a reason. However, there is no reason why a national database of health research couldn't be produced. Then doctors would be able to search for people doing research in a certain area.

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Unidentified

On page 5 of his book Dave says that he found information online about his prognosis that scared him but later he found wasn't accurate and he scared himself needlessly and as you mentioned it was his doc who sent him to the online support group. I don't really see how he is empowered?

Did his doctor and oncologist at a major teaching hospital not know about a trial at their own hospital for his cancer? It sounds like what we need is for the doctors to have current information rather then expecting patients to go to medical school while sick and under stress. No one expects me to know how to fix my car why should I have to be an expert in cancer treatment? I want to be a full partner but it is not realistic to expect patients to be experts in such a complex and rapidly changing field.

BTW - I think the first comment below is in reference to the fact that the US government is already investing billions in health IT but some of the EHR's as well as web sites like Patients Like Me (with only a few thousand members) are selling personal patient data to drug companies and people need to know that.

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e-Patient Dave

Hey, unidentified - good questions - who are you? No need to be scared.

Lori did a superb job of compressing a deep, complex story into a few paragraphs, without a single error. Trust me when I say that's not the norm. The only thing I'd add is that my primary, Dr. Danny Sands, was/is a member of the e-patients.net community, which in 2009 incorporated as the Society for Participatory Medicine, which Lori mentions. So there's a connection that she didn't note.

Not coincidentally, the founder of ACOR.org was another member of e-patients.net.

To answer your question, what the ACOR gang gave me included the names and phone numbers of the 4 docs in my part of the US who administer HDIL-2. One of them was the oncologist to whom I was already being steered. Obviously they knew about it. But here's the kicker: I've since learned that 3 out of 4 kidney cancer patients never even HEAR about it as an option.

And I've learned that part of the reason is that if your community oncologist (non-specialist), who doesn't see many kidney cancer cases, goes and looks in the NCCN database for treatment options, s/he will see information that's YEARS out of date regarding both the response rate and the mortality rate from using IL-2. One onc I talked to said his research showed 7% response rate and 4% death rate from that treatment. The ACOR community knows that the most recent clinical trial showed 30% response, and 1.5% mortality. (My hospital has lost 1 patient in the last 1200; hence ACOR's advice, "Get yourself to a specialist center that does a lot of cases." Try finding THAT advice on the American Cancer Society or any other site.)

My oncologist has confirmed all the above. If you doubt any of it, I'll be happy to connect you with him.

You can ponder for yourself what it means that a community of smart, hardworking patients knows something that is NOT ACCESSIBLE to non-specialist oncologists who look in the databases they're told to read.

I don't *expect* patients to be experts - that's silly, as you suggest. What I do ask is that when a patient shows up with information to contribute to his/her care, professionals listen, not sneer - that they realize it's not realistic for any of us to expect physicians to be current on everything.

The exception, my onc says, is "Unless you're a sub-sub-specialist." IOW, not just an oncologist (specialist); not just a kidney cancer oncologist (sub-specialist); a specialist in stage IV renal cell carcinoma. In THAT case, you can keep up with everything.

(Far more detail than Lori could cover is in the videos of past speeches on my site, www.epatientdave.com/videos.)

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tmylen
Community Member

Patient driven health care consumption is the way to go. Although MDs make all the resource consumption decisions, it is up to patients to become aware of the details and medical regimens for their particular condition(s). Having been an RN for 29 years I have professionally participated in the administration of medical treatment protocols for various types of cancer. Progress is made incrementally and sometimes breakthroughs do occur. Even one or two year old information may not reflect the current research using differing combinations of surgery, radiation, legacy and new drugs in clinical trials. We are getting smarter exponentially. Online information mining and sharing among patients and non-patients alike is currently the best alternative for making up-to-date medical information available to the audience in need. But protection of the patient's privacy is a real concern. Ideally, current information from ongoing clinical trials and availability of new treatment regimens should be aggragated in one online location to provide for a one-stop shop and news feeds to patients with specific problems. Prevention and management of chronic problems is the best way to save the most money. Also, alternative healthcare system entry portals and screening centers beyond MD offices and emergency rooms need to be developed. Early detection increases survival rates in most acute and chronic disease situations. Open source has made new software technologies available to a wider audience and spurs innovation by harnessing the power of the wider community. Patient specific medical information needs to be made available to medical providers and patients, alike. Anonymous medical information should be available to all others desiring higher levels of wellness.

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