Thursday April 19th

Present: Sarah K., John G., Gonzalo B., Alan G., Sue W., Michael M.

1. Minutes from prior meeting (Deb)
2. Quarterly Board Meeting (Alan)
   • President of the board to put together agenda – this will be either Sarah/Danny
   • The larger board meeting is normally held the 3rd Thursday of every quarter – thinking about pushing it back to july
     • update on the Journal and voting in new board members are first on the agenda
   • Paul Carol David are rotating off Board ’12 and ’13
   • Sue and Gonzalo and John G. have terms ending on the Exec Committee in July
   • 2 Members at Large – 1 year position: currently Sarah and Gonzalo: anyone could be nominated by members, that list is then winnowed down by exec team, then open member election occurs
   • For the final phase of the open member election, we are thinking about establishing rough guidelines to help members nominate “Members at Large.”
   • • Members at large should be availability every two weeks for calls
     • Members at large should be willing to take on tasks in between calls
     • We’d like to see one member at large position represent the voice of patient and  one member at large position representing the voice of provider
   • current board also elects 1 member
   • founders elect 1 member
3. Seal update (Alan)
   • Main planning call happened to launch the build of the seal platform
     • Seal.participatorymedicine.org  approved
   • Alan, Sarah, Grohol, Danny, Fred,  Cheryl and  Elise Singer (PM) Alan Vyers (Developer)
   • 4 week timeline on first build
4. Stage 2 MU (Sarah)*
   
   • SPM  responding to the official ONC Meaningful Use Guidelines
     • how technical should we SPM’s response be and what is a reasonable amount of time for patients to be sent data?
       • Danny expressed concerned about how technical our reaction to OFF is
       • Brief discussion around the double edge sword of immediate release and ability of patient to understand raw data
       • Sue points out that the one week delay is unnecessary and research done on the patient perspective, shows that they can handle being sent the raw data
       • Alan: our response can mention OFF as an example but SPM doesn’t want to get in the habit of prescribing specific solutions
   • Sarah: requests that we please make final comment by Saturday’s deadline

   
   

5. Strategic plan/Mission and guiding principles *
   • Need approval by end of day tomorrow
   • Interviews indicate that we need to do more than the patient provider perspective that we also need to integrate other perspectives
     • Michael: one of the findings of the interviews was that SPM needs to distinguish between self-help movement and patients participating in and interacting with the larger healthcare system
     • Sue: SPM should not leave anyone out, if people don’t want to engage in the lager healthcare system that doesn’t mean their not “participating” in their own care- we need to make sure our definition includes the patient perspective in the broadest scenes and includes patients taking a non-system approach
     • Sarah: we need to reach the patients currently in the system. They stand to gain the most from PM
       
6. HIMSS partnership *
   • MOU Text : NOT YET APPROVED – the text below is only for review during the meeting. A version of this text is currently being edited by exec committee members but this was our starting point.
     • Purpose:
       The purpose of this MOU is to establish a mutual synergistic and complementary relationship educate and promote to HIMSS and the Society for Participatory Medicine’s members eConnecting with patients and families through engagement with personal health records, patient portal adoption, social media, mHealth and other emerging health related technologies.

       Mutual Responsibilities:
       To achieve these target outcomes, each party will have the following set of responsibilities:
       
       HIMSS will:
       • Provide the Society with a complimentary Non-Profit Partner Membership
       • Work collaboratively on co-branded webinars around topic of eConnecting with Consumers. Webinar details will be identified in a separate addendum.
       • Identify opportunities for shared support, such as posting a web button or link from a HIMSS content web page to the Society’s web site (the Society will provide the web button)
       • Identify opportunities to develop co-branded resources and tools that can be developed and included in the HIMSS web-based eCC Tool Kit to equip providers engage consumers in their healthcare utilizing HIT.
       • Provide SPM with a non-voting member advisor seat to the HIMSS eCC Committee.
       • HIMSS staff and/or approved volunteer subject matter experts will assist with content on SPM newsletter as appropriate on provider patient engagement utilizing HIT.
       
       SPM will:
       • Provide HIMSS with a complimentary Membership
       • Work collaboratively on co-branded webinars around topic of eConnecting with Consumers, including patient/consumer participation. The webinar details will be identified in a separate addendum.
       • Identify opportunities for shared support, such as posting a web button or
       link from a Society’s content web page to HIMSS web site (HIMSS will provide the web button)
       • Identify opportunities to develop co-branded resources and tools that can be developed and included on the SPM website and in the HIMSS web-based eCC Tool Kit to enable providers to engage consumers in their healthcare utilizing HIT.
       • Inform HIMSS on HIT Usability key imperative for providers to effectively
       communicate and manage their care with providers through the SPM Patient Advisory Council.
       • Identify opportunities for approved HIMSS staff and volunteers to act as subject matter experts to assist with content on SPM newsletter as appropriate on provider patient engagement utilizing HIT.
       
       Amendments/Termination:
       Either Party may suggest amendments and/or additions to the terms above with an addendum. Either party may also terminate this Agreement by providing forty-five (45) days written notice to the other at the address first written above.

   • Deb: thinks SPM should pass on this very generous offer from HIMSS. She does not believe that SPM has the fully defined identity required to be equally represented in a relationship with a partner of this magnitude. She fears that the media engine of HIMSS will absorb the “brand” of SPM. She would like to reconsider such a relationship a year from now after the launch of the Seal Program and Goals Committee guidelines have been set forth. That being said, this is a major milestone for SPM and she is excited to see us grow as an organization even as it requires difficult judgment calls.
   • Sue: modifying the language would be important (for example she’s not sure we want a HIMSS button on SPM site)
   • John and Alan: we’ll be getting a bunch of publicity and exposure  that normally costs $10,000s. We have a lot to gain from partnering with such a large group as such a small organization.
   • Michael: Shares Deb’s caution – we need to be well defined before engaging with HIMSS
   • Sue: HIMSS needs the patient/provider collaborative perspective we can offer – they’re posed to make millions and we need the patient perspective in there.
   • Sarah: they are planing their budget and this would be a missed opportunity if we didn’t get our foot in the door. Please review language you would like to have revised and we’ll get back to them ASAP.
7. Adherence Summit *
   • Info on the Patient Adherence Working Group
   • We did not get to this topic or hosting a panel at CCH