Sue: I’m a researcher and live in that world. One thing researchers struggle with is disseminating the messages that emerge from their research. It’s a huge struggle. Would argue that we should have an agenda collaborating with other orgs to get the word out about existing research. Worked in data feedback for years – showing people the data is not enough to achieve a transformation; need an emotional connection, e.g. through stories (as Dave advocates).

Sarah: Her group is doing a patient/provider research study – conversations with healthcare providers, what patients think they heard vs what they actually heard. That will feed into education. We could call on our members re whether they want to get involved in research, or if they’re doing research, associated it with the SPM brand.

Danny: Who’s going to take the lead going forward with the issue of research? Maybe we could expand into a member benefit (e.g. briefings on latest relevant research). This probably needs a posse. Dave and Sue volunteered (by Danny) to take the lead on this. Also Sara and Gonzalo. Sara says she’ll take the lead, Sue will colead. Start slow, come up with an agenda, and push it forward. Dave thinks we shouldn’t be too slow, Danny just doesn’t want the task to feel formidable.

Don’t reinvent the wheel, see who’s already doing this, draw on existing work. Connect research to stories.

Last year here at Health 2.0 we crowd-sourced comments on our draft guidelines for Participatory Medicine (originally authored by Indu Subaiya, Carol Peckham, and Alan Greene). We’ve incorporated feedback obtained here and subsequently throughout the year and are now back with the results. While preserving the deeper guidelines as a resource, we’ve focused the dozens of guidelines down to 4 simple, actionable, measurable Goals that will be the basis of a Seal Program identifying providers willing to make these commitments. These Goals were selected both to recognize who is practicing Participatory Medicine and to actively engender greater participation. The initial target is to have 10,000 clinicians obtain the Seal.

Health Data in the Hands of Patients. Participatory providers will proactively provide direct access to laboratory values and other health data as a matter of course. “We’ll call you if there’s an abnormal result,” has no place in Participatory Medicine.Feedback from Patients. Participatory providers will encourage patient feedback and make arrangements for anonymous feedback mechanisms.

• Suggested: also have participatory patient criteria. (Danny: let’s not let that hold up the physician seal.)
• Indu has offered to facilitate the physical implementation of the seal – a site people can link to.
• Danny: don’t have a feel for the whole program: who nominates, is it whole practices or individual providers, etc.
• Alan: This is aspirational – saying “I’m committed to these ideals” – the 4 are – putting health data in patient’s hands, encouraging feedback (w a mechanism to do it), pt advisory council, putting resources in the hands of patients.
  • Individuals don’t have to be members, don’t have to pay money; our purpose is to spread awareness of the ideals. (We voted on that in a previous meeting.)
  • But organizations have to be a member.
• Danny: please send out the details again – this is a very important process, don’t want to rush it.
• Danny raises question: if I’m an individual in a group practice how can I have a pt advisory council??  (Good question.)
• Sue: maybe we should have more of a participatory design
• Discussion; Alan to circulate the draft again.
• Danny: I’d like to see the process for reviewing complaints (revoking someone’s seal)

Patient Advisory Council. Each participatory provider will convene a group of patients to provide input and feedback. The group could do its work virtually or in person. They will consider suggestions and feedback provided by other patients.

Resources in the Hands of Patients. Participatory providers will provide resources for additional learning about every diagnosis made (including age-appropriate health maintenance for a normal physical exam). These resources may be physical handouts, web Urls, book titles, the names of mobile apps, etc.

Providers committing to these four items could be nominated by patients, peers, or themselves to receive the Society Seal. We would maintain a public list of these providers and the opportunity for patients to comment on these four aspects of Participatory Medicine in the practice. We intend to collect the best stories of e-patients and participatory providers and feature them on a panel here next year.

Indu has agreed to take charge of the seal platform : entirely free – aspirational goals – neither nominators nor nominated have to be members : Intentionally open in order to propel the meme and encourage dialog

One last Exec Team pass at these criteria:

• Perhaps getting other groups involved like insurers or ACO/Hospital compare databases?
• What if someone is prohibited from making one of these changes by the nature of their practice e.g. federal employees can’t go out and develop patient review boards could they still be nominated?

We are considering developing matching participatory patient behaviors: Dave

• Marcela Musgrove is leading the #S4PM Tweetchats, which have been on hiatus but will restart next week. Gangadhar Sulkunte is maintaining stats. It would be good to look at those and think how to improve – we haven’t done this; it’s a good subject for a future meeting.

• Lana Chun Kim suggested that we ask for more volunteers from the member list, with specific tasks in mind. Some of our team members have drifted, so we need some new energy.

• We discussed how on Facebook and Twitter, we have two presences each, one for SPM and one for JOPM.  Lana will post to the SPM Facebook page, and if there’s relevant research-oriented material, that might go on the JOPM page. Otherwise Kathleen O’Malley will post links to new JOPM content on the JOPM Facebook page.

• Tabitha Kerkove was overseeing the LinkedIn group, and says she can continue to do so, though she’s pretty busy, so I’m realizing I need to support her. The group has 332 members, which I think is more members than we have at the Society. Given its potential value, we need to work it consistently.

• There are outreach and Communications intiatives via Emily Hackel and Sarah Krug. Nancy Finn represents the Communications Team in those conversations, and is trying to set up a conversation with Sara Krug and I, mainly to update me on Sara’s thoughts about communication strategy.