From the lens of a patient who recently experienced major surgery, I now realize how difficult it is to be participatory when you are in pain and taking large doses of pain medication which dulls the senses and puts you in a place where you are not really thinking about anything but how to get through the next couple of days.

I consider myself to be an empowered patient who fully participates in my health care, questions my clinicians, and evaluates the risk/benefit of treatment plans presented by my clinicians.

I use the health data my clinician offers, including the reports and notes that are in my electronic health record, and confer with people who have had some experience with the same or similar conditions. I always go one step further and search the web for relevant information that applies to my particular health concerns. I provide feedback to my doctors and never hesitate to speak up and ask questions. I tap the wisdom and advice of my peers and encourage my providers to be participatory.

By the time of my surgery I was fully prepared so that I completely understood what I was getting into. However, I could not anticipate that a cough that I had before the surgery would precipitate into a full blown asthma attack for which I had not prepared.

We have posted many stories featuring mothers over the years. In celebration of Mother’s Day, a compilation:

A Lifetime of Participatory Medicine Can Start With Maternity Care

Through the Land of Smoke and Mirrors: An e-Patient’s Odyssey (“Mama Lion” part one)

Great news from “Mama Lion” Engelman and daughter (“Mama Lion” part two)

The Unwilling E-Patient: Learning to use my mother-of-a-patient voice

Mama birds: Catherine Fairchild Calhoun and Laurie Strongin

Health Care Hackers

And, if that’s not enough, here’s my compilation of recent posts by powerful moms writing about health and care.

The FDA launched an impressive patient network website this month, after nearly four years of research, focus groups, usability testing and more. The twin goals for this website are promoting the educational mission of the FDA, and promoting opportunities for patient advocacy within the FDA — and earlier in the policymaking process than has been the case historically. James Valentine, Program Analyst in the Office for Health and Constituent Affairs put it simply and forcefully in a recent telephone conversation: “The idea is to engage the patient community, to have the patient voice heard at the FDA.”

The new darling of the online educational community is Massively Open Online Courses (MOOCs). The example which figures most prominently in the popular imagination is the Khan Academy, though its founder says otherwise, noting that MOOCs are merely online transplantations of traditional courses, while Khan Academy offers something different.

Others would take issue with his conclusion, or characterization. A “connectivist” MOOC is based on four principles:

• Aggregation. The whole point of a connectivist MOOC is to provide a starting point for a massive amount of content to be produced in different places online, which is later aggregated as a newsletter or a web page accessible to participants on a regular basis. This is in contrast to traditional courses, where the content is prepared ahead of time.
• Remixing, that is, associating materials created within the course with each other and with materials elsewhere.
• Re-purposing of aggregated and remixed materials to suit the goals of each participant.
• Feeding forward, sharing of re-purposed ideas and content with other participants and the rest of the world.

Sounds great, but is it working? Can it work?

This is our monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine. Follow the Society on Twitter (@S4PM), Facebook, and LinkedIn.  Here’s how to become a Society member, individual or corporate.

Our publications:

• This blog is e-patients.net. Subscribe via RSS or email, tweets etc.
• Our open-access journal is the Journal of Participatory Medicine (Twitter: @JourPM)

“Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”

Additional resources:

• Our manifesto: the e-Patient White Paper (PDF), in English and Spanish
• The Society’s member list, board and officers, and member listserv archives (members only)
• Our founders
• Guidelines for submitting guest posts about participatory medicine, for this blog
• Author guidelines for submissions to the Journal of Participatory Medicine
• Wikipedia pages for participatory medicine and e-patient

Contact us:

• Volunteering: volunteer@participatorymedicine.org
• Blog: blog@participatorymedicine.org
  • As a Society blog, we do not accept unsolicited guest posts from non-members. See our Guest Posts page.
• General information: info@participatorymedicine.org

Rebecka Sexton of the Center For Innovation at the Carilion Clinic in Roanoke, VA, emailed a great question and I’d like to share it more widely:

We are working on a project here at Carilion on chronic diseases related to Population Health Management related to COPD.

I am specifically working on the education component from a service design perspective and am trying to better understand how COPD patients learn,  where their pain points are related to education, what they need education about, etc. The learnings will result in solutions and recommendations to Carilion Clinic. Of course, the social media and technology component enters in because COPD patients are often older and in western Virigina, on Medicaid and many can’t read although they might have phones. I am also considering that education occurs through conversations online too. I am wondering if you can suggest anything for me to look at related to this topic.

SPM member Jody Schoger’s post “Cancer: Part Two” at her blog Women with Cancer landed with a big thud on April 26. Schoger was recently diagnosed with metastatic breast cancer. She’s a co-founder of #bcsm (breast cancer social media), one of the highest rated Tweetchats with almost 6,000 tweets per month.

In less than two years the group has gained so much momentum that it has branched into other media. Dan Munro discussed the #bcsm phenomenon in Forbes.com in March. “What #BCSM does exemplify…is how to be open, direct and cut through the layers of healthcare bureaucracies we’ve spent decades building,” he wrote.

In an email to me Schoger said “To be empowered and engaged…means I know what to do now that this has occurred.  I know how to navigate and who has my back.”  Schoger is one of the 150,000 American women previously treated for early stage breast cancer who are now living with metastatic breast cancer, which is the only fatal kind. “It can occur 5, 10, 15 or even 20 years after a person’s original diagnosis,” according to the Metastatic Breast Cancer Network.

In Forbes, Munro quoted Schoger as saying

#BCSM is true grass roots effort…We have absolutely no intention of reinventing the breast cancer wheel or duplicating the work of other breast cancer organizations. But we have every intention of reshaping how social media can be used to empower women affected by cancer. (emphasis mine)

Symplur measured 2.6 million impressions resulting from #bcsm April 29. Participants in the rapid-paced tweetchat were sad, angry and more focused than ever.

Schoger’s most recent post starts this way:

Friday, April 26, 2013

Cancer: Round Two

This is how things change.

On Tuesday, April 9 we celebrate DH’s (darling husband’s) birthday with an extravagant dinner with friends at our favorite restaurant. We make happy noises about the food and pass around bites so rich it is absurd to even contemplate their arterial impact. We simply go with the moment and taste everything.

The next day I’m at MD Anderson for my yearly visit to the survivorship clinic. This will mark – let’s celebrate anyway – my 15th cancer-free year.  The mammogram shows an anomaly.  We take another view. The second shot is inconclusive.  My nurse practitioner meets me in the exam room and says, “I don’t want to alarm you, but we need to get another an ultrasound to make sure it’s benign.”

I’m not alarmed. Lobular breast cancer, which affects approximately 10 percent of all breast cancer cases, does not image well.  Never has, never will.  It’s sneaky. The cells line up in a single file instead of clustering to form a mass.

Read the rest of this blog post at Schoger’s blog.

What if kids were given the support to participate in and understand their own health care? – @savingcase

For more health care dreams, please see:

What if health care…? (Storify)

Or any of my other #whatifhc posts.

With the tireless help of Adrian Gropper, and the counsel of executive committee members Michael Millenson and Danny Sands who went above and beyond, and our President Sarah Krüg, the Society for Participatory Medicine’s Public Policy Committee completed a last-minute blitz and submitted comments in response to the Office of the National Coordinator for Health Information Technology (ONC) request for Information (RFI) on advancing interoperability of electronic health records and health information exchanges (HIE) through sub-regulatory policy change. I want to acknowledge the contributions of Keith Boone and Fred Trotter as well. Keith, Fred and I had the opportunity to discuss these issues and others in person last weekend in Boston at an unconference (see blog posts by Keith, Ted Eytan and me). As we discussed these issues, Regina Holliday  painted “The Open Door,”  included at the head of this post.

Imagine a black box.

You can feed all sorts of information and data into it all the live long day. But the amount of data you can get out of it is limited. It just stares back at you with its blank, neutral sides. It can tell you things like where it was manufactured, or what color it is, or how many times it’s been moved today. But it can’t tell you what’s inside it, and whether what’s inside needs a little attention.

That is the human body today — you can put things into it, but the amount of information you or I can glean from it is limited.

It’s a frustrating situation, made even more so by the quantified self and personal genetics movements.

How could a personal data movement regarding your health or your body actually make things more frustrating?