Update March 24: I’m retitling this post, and putting it on hold, pending resolution of important concerns raised by other members of our Society for Participatory Medicine. In particular, see Adrian Gropper’s posts on The Health Care  Blog. This is almost a retraction, pending whether CommonWell changes its position and actually becomes patient-driven. If not, I suspect they’re being disingenuous and I’m outahere.

In a comment on THCB on 3/21 Gropper summarized last week’s Tweetchat (hosted by SPM) thus:

In last night’s Tweetchat, we had participation from 3 of the 5 founding companies, including two key architects of BlueButton+, a lawyer, and many Society for Participatory Medicine members.

Here’s my summary:
– The people involved in CommonWell are top-notch, honorable and experienced
– CommonWell does not consider “Gimme My DaM Data” or patient engagement a priority
– CommonWell says they will involve patients in governance but this is meaningless if it’s not an open standards process
– CommonWell will not use an open standards process – this means there’s no open forum for us
– CommonWell is “going for results” with provider-to-provider communications as their priority
– Even though they helped create BlueButton+, CommonWell is not committed to using it

For now, the bottom line is that we need an open forum that shadows everything CommonWell does and adds the e-patient perspective for all to see. This forum therefore needs to be open to the world.

This is how open standards evolve.

Adrian knows much more than I (as do many others) about the health IT industry, though I’ve seen similar efforts in other industries. So his remark here gives me concern, too:

To maintain an industry that derives 60% of revenues from interface and installation costs, CommonWell is designed to overlap and undercut the efforts of state Health information exchanges.

My view is that the entire reason for the existence of the data is to accomplish care for sick people, and I see no moral ground for in any way withholding any of the data within vendor walls. I mean, we’re talking about parents’ ability to participate in care of sick kids! And comparable family situations. State health information exchanges, designed by our government to benefit citizens (not vendors), are what we need.

I know a massive industry has been built up around processing medical data, but that industry isn’t the reason the data exists. Sick family members are the reason.

Until this is resolved with a clear emphasis on letting patients help – a priority on letting patients help, on creating an open ecosystem for development of truly patient-centered tools – then I withhold the approval I gave in this post.

Now here’s the original post, when CommonWell was first announced at HIMSS. This is the potential I saw, which I still want.

___________

See important update added below about Epic, 3:45pm ET the next day.

A quick note – mark my words, this is important -

At the big HIMSS health IT conference, six vendors of electronic health records have announced that they’ll be collaborating to share data as the Commonwell Health Alliance. That’s your data, our data, your family’s data.

The members are Cerner, McKesson, Allscripts, athenahealth, Greenway Medical Technologies and RelayHealth. Significantly missing is the Big Dog in the field, Epic, which is notoriously “all about us,” i.e. themselves.

Of course all the lesser dogs have a motivation in this – to band together and try to knock Big Dog off the top of the mountain.

Important update next day: Thanks to SPM member Brian Ahier for circulating a link to this article in which Epic says they weren’t invited to join CommonWell. Epic also says CommonWell is “yet another distraction,” a competitive tactic by their rivals.

Read about CommonWell here. Top EHR vendors join CommonWell Alliance to boost interoperability

My take: Market forces are starting to emerge.

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

A guest post by Wendy White, Founder & President of Siren Interactive

Each year Rare Disease Day is celebrated worldwide on the last day of February. This year is even more special because it’s the 30th anniversary of the Orphan Drug Act, which provides incentives to encourage companies to develop rare disease therapies, and the founding of the National Organization for Rare Disorders (NORD).

For 2013 the theme for Rare Disease Day is “Rare Disorders Without Borders.” Nowhere is this more evident than the online space, where rare disease patients and caregivers provide support for one another.

“More than half of the people who have rare diseases are children,” notes Peter L. Saltonstall, president and CEO of NORD. “Challenges faced by patients and their families include delayed diagnosis, few treatment options, and difficulty finding medical experts.”

The purpose of Rare Disease Day is to spread awareness of rare disorders. For example, many people are unaware that 1 in 10 Americans live with a rare disease. To support Rare Disease Day 2013, the team at Siren Interactive has created an infographic on rare diseases. It provides a visually interesting way to learn about orphan conditions and share this information.

A personal connection

The overlap between the clinical aspects of our health journey and behavior of health team members occurs most often in medication management. Effective medication management depends on empowered, informed patients and caregivers prepared for clinician visits, and engaged clinicians skilled at working with activated patients. This strong relationship of health team members advances patient safety, improves outcomes, and positively impacts life flow and work flow. Patients, caregivers, and clinicians can use tools to improve the effectiveness of medication management.  Current methods are often haphazard, disorganized, time consuming, frustrating and are clinician facing, not patient facing.How can we systematically approach the opportunities in medication management and support the various tools available or needed?

This is a long post, but it strikes deep to the core of the transformation underway in medicine, even in the science that drives medicine.

It appears the world is starting to change, in a very good way.

We’ve often written about the changing culture of medicine, as the professions begin to understand the value of the voice of the patient. This trend got a big boost in September, when the Institute of Medicine (IOM) published its new report Best Care at Lower Cost, which said, among other things:

Patient-Clinician Partnerships

Engaged, empowered patients— A learning health care system is anchored on patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team.

For years our movement has suffered a lack of credibility from people who said that if patient engagement was intellectually valid, academic medicine would be saying so. Well, THAT’s done.[1]

There’s been a great thread on Dr. Wes’ blog and the SPM listserv about patients obtaining and reading their own EKG’s.  As you can imagine — lots of pros and cons. A significant difference noted between the right to have the information (“tracing”) and the ability to interpret the tracing and use it to guide health management. The first is black and white to me: of course we can have our EKGs. The interpretation and use of the interpretation is more gray.

This is the big update to our preview post last November.

There’s a stage in a movement where it starts to get serious media coverage, and ours is coming of age. We’ve documented the progress:

• 2009: Susannah Fox was on NPR’s Morning Edition: Participatory medicine and health data rights on NPR
• 2010: Time reported on SPM and patient communities ACOR and PatientsLikeMe
• 2011: CBS Evening News reported on Shared Decision Making
• 2012: Device data rights activist Hugo Campos has been in print and NPR numerous times

Now, the next big news: This month for the first time, a local PBS station premieres a program that’s explicitly about the “e” word: “My Health Counts: e-Patients”!

Produced by WNED Buffalo-Toronto (@WNEDTV), the 30 minute program is hosted by Susan Hunt, who did an extraordinary job. It includes:

Cross-posted from Regina’s own blog. Please vote for her Shorty Award nomination by posting a Tweet here through Monday, Feb 18. She only needs about 80 votes to get into the top six finalists in #activism.

I’m cross-posting this for two reasons. First, in this post she articulates, better than any I’ve seen, what drives an evangelist (like many members of our Society) in his/her efforts, not just to spread her word but to develop herself, with no motivation other than to become better at doing it.

Starting from nothing. Connecting with peers, enabled and empowered by social media, and driven to improve the world.

Second, the post illustrates something that some business observers I’ve met simply do not get: believe it or not, some people are truly trying to change the world. Last summer at a retreat I met an investment adviser who’d seen Regina speak twice. As we talked I could tell he was trying to reconcile her message with his world view – that everyone’s got a racket, everyone’s manipulating everyone else. Eventually he shrugged it off, dismissing the subject with “She’s not real – she cried at the same place both times.”

Well dude, you so don’t get it.

According to a recent Harris Poll, walk-in medical clinics located in pharmacies, shopping malls, office parks and workplaces are getting more and more popular with health care consumers. The poll reported that of the 3,000 adults surveyed online, 27% said they have used walk-in retail or work based clinics in the past two years. That number is up 7 percent from a poll conducted in 2008.

Feedback from these patients indicates that, for the most part, patients are satisfied with the care they are receiving.

People generally visit the walk-in clinic for basic health services related to colds, sore throats, minor cuts, wounds, and general immunizations. Many clinics offer free screening tests for diabetes and cholesterol. As a result, patients have begun to use the clinics for managing their chronic conditions such as hypertension, asthma and diabetes, to check their blood pressure, blood sugar, and cholesterol.

For over a year I’ve been the accidental manager of a community garden. All I did — I swear — is point out an open plot of land and people started pitching in, planting, asking friends to join them. All of a sudden we’d transformed a bare patch into something beautiful.

I thought for sure that interest would wane. I’d be left with a lovely little garden to tend on my own and I’d probably let it go after a while. But new people kept showing up to help. I frankly wasn’t ready but they came in, planted new flowers, and invited their friends to come over. They expanded the original plot and just kept going.

OK, so, before I take the metaphor too far, I should reveal that I’m not talking about a real garden. The community didn’t plant flowers. They planted ideas about what health care could be like if we remade it, without regard for money, politics, or any other reality.