Tag Archives: patient communities

Now adding to Data Liberatión: Patient Data Generatión!

Move over, Data Liberacion! In the words of Todd Park, who wants to Free the Data!, and e-patient Dave, who wants to Let Patients Help!….there’s a new era —

Patient Data Generación!

There’s been some great postings and stories about patient-generated data. Empowered and engaged people who dig into their health data and try to use it to their advantage. And share it with their doctors to help THEM! (and I’m not talking about blood pressure and blood sugar monitoring)

In A Graphic Use Of Drugs: How One Patient Visualized His Health Data, Forbes wrote about Ken Spriggs, a Chicago commodities trader who has dealt with a variety of inflammatory conditions. He mapped out, over years, the number of drugs he has been on. A particular quote from the Forbes post is particularly emblematic of the struggles people/patients have in making sense of their health and their healthcare:

It took four arduous months for Spriggs to collect his data in the form of 600 loose papers, many handwritten, from doctors and hospitals in Chicago, Fort Collins, Co., and Charleston, S.C.; he just finished.

Most of you probably haven’t seen another patient-generated data posting on the MPN Forum, a social media site on myeloproliferative neoplasms. A recent entry, The Empowered Patient, is a phenomenal post by my dear friend and colleague, Michael Goldstein. Michael knows more about empowering and empowered patients than anyone. He’s a physician, great teacher and researcher (on patient-provider communication), and now leader and visionary at the Veterans Health Administration’s National Center for Health Promotion and Disease Prevention.

After you read this excerpt from Michael’s post, you’ll want to read the whole thing:

My oncologist marveled at my quite rudimentary spreadsheet, created from an online Personal Health Record (PHR) program. He asked me if he could make a copy of the graphs to scan into my chart, remarking, “I wish all my patients brought in graphs like these!” The good news is that we all can! And, there is evidence that if we monitor and track our own medical data, we can improve the quality and safety of our care.

I realize these are two real smart guys who know data inside and out. Thinking most people wouldn’t be able to do this? Maybe. With the right tools, and the right support, they probably can.

Patient Data Generation – a consumer health revolution!

An Apple a Day Might Keep the Doctor Away – if Steve Jobs was in healthcare…

I just got to Rochester, Minnesota for the Mayo Clinic Social Media Summit. I anxiously await the next 2 days for an exciting lineup on using social media in healthcare.

There’s a great Veterans Administration contingent here. Tonight I’m here with @chipharman, @RachelECondy, @erinhynes, @DawnellRDorio, @Hi2molly (Molly Manion), @Tweet16C (Diane Bedecarre). We’re enjoying wine and refreshments, spirited discussion and group energy.

We were talking about how organizations need to take advantage of employees’ creativity and passion (hello!!)…and I mentioned how inspiring it was to hear the 1996 interview NPR’s Terry Gross did with Steve Jobs (re-played the day after his death). Many great things have been written about him the past few weeks, but I find his words the most glorious. In this interview, Jobs talked about 2 ingredients he found essential to success: (1) “watering” clever employees to drive innovation, and (2) bringing ART to the science of technology.

GROSS: I wonder if there are any lessons you learned about what worked and didn’t work in the corporate lifestyle at Apple that you’ve applied to your current companies, NeXT and Pixar.

JOBS: Apple was a very bottoms-up company when it came to a lot of its great ideas. And we hired, you know, truly great people and gave them the room to do great work. A lot of companies – I know it sounds crazy – but a lot of companies don’t do that. They hire people to tell them what to do. We hired people to tell us what to do. And that led to a very different corporate culture, and one that’s really much more collegial than hierarchical.

GROSS: What do you think the state of the computer would be if it weren’t for Apple? This is a chance, I guess, for a really self-serving answer. But, I mean, I’m really curious what you think.

JOBS: I think our major contribution was in bringing a liberal arts point of view to the use of computers. If you really look at the ease of use of the Macintosh, the driving motivation behind that was to bring not only ease of use to people – so that many, many more people could use computers for nontraditional things at that time – but it was to bring, you know, beautiful fonts and typography to people, it was to bring graphics to people, not for, you know, plotting laminar flow calculations, but so that they could see beautiful, you know, photographs, or pictures, or artwork, et cetera, to help them communicate what they were doing potentially.

Our goal was to bring a liberal arts perspective and a liberal arts audience to what had traditionally been, you know, a very geeky technology and a very geeky audience.


Now I keep thinking: What If Steve Jobs was in healthcare? He would have taken Health 2.0 ideas, blended them with the best innovators and added a high level of ART and user design. It would have conjured up something we probably haven’t seen – YET, like —

1. Easy ways for patients to enter stories into the health record (written, audio, video).
2. New built environments (UNwaiting rooms) that SHOW people patient-facing health technology.
3. Full sharing of the electronic record – on any device, anywhere.
4. Specialist visits on the T.V. (or device du jour) for self-care, triage and treatment.
5. Incentives (lower premiums) just for using health technology, including peer support.
6. Getting tailored information, like where to find care virtual/in-person and cheapest medications.
7. New community places…where health, work, education, energy & financial support ALL converge.

Double Sigh. I definitely think an Apple a Day would have kept the doctor at bay.

Patient Networking Research: Users Benefit With and Without Physicians

This month the Journal of Medical Internet Research published a study of users of Patients Like Me, a patient-directed networking site supporting people with conditions ranging from HIV to fibromyalgia to Parkinsons and multiple sclerosis.

Sharing Health Data for Better Outcomes on PatientsLikeMe. Paul Wicks, PhD; Michael Massagli, PhD; Jeana Frost, PhD; Catherine Brownstein, PhD; Sally Okun, RN; Timothy Vaughan, PhD; Richard Bradley, RN; James Heywood, SB.

As I read it I paid particular attention to bias, since it comes from the website owners. The authors did a respectable job describing study limitations, including likely response bias among those more engaged in their health, and confiding they were looking for positive results.

Among 6825 website “members” presented the survey, 1323 (19%) responded. Responders said the tool helped most in learning about symptoms or medication side effects, recording symptoms or understanding treatment effects. Users gained insight into their condition and increased their coping abilities. Among those with HIV, 71% gained interest in their lab results. Given the degree of social support with such a site, user benefit of self-care is hardly surprising.

What responders said about using Patients Like Me in the context of clinical care was more intriguing.

About 1 out of 3 printed and shared summaries of their symptoms, treatments and outcomes with their clinician. Because of their participation, 2 out of 3 said it was easier to communicate with clinicians (21% a lot) and felt more involved in treatment decisions.

A small but too-big-to-ignore number said they changed providers as a result of website use. It’s unclear what this actually represents. Perhaps users or survey responders have lower access to care; perhaps it does indicate empowerment and raised expectations. As a cross sectional survey, the relationship between usage and behavior cannot be discerned. The authors recognize this, stating

…further research will be needed to elucidate the causal chain: is it that engaged users find more benefit, or that patients who have benefited from the site come back to use more of its features?

Indeed, more research is needed now. Studying the interaction between online support and clinical care, using longitudinal cohort designs, should be supported. Finding an association between site usage and changes in patient (and clinician) behaviors and outcomes has implications for promotion and clinical integration – in particular, linking valuable sites to patient portals and personal health records.

Partnerships wanted: clinical centers, researchers and robust patient online networking sites.

What’s your idea for research and evaluation?