From David Harlow JD MPH, policy chair for our Society for Participatory Medicine:

Click to open letter to CMS (PDF, 183k)

Click to open letter to ONC (PDF, 183k)

I’ve uploaded SPM’s comment letters for Meaningful Use Stage 2 regulations, one for the Medicare/Medicaid regulations, one for ONC. Each letter opens like this:
____________

The Society for Participatory Medicine applauds the work done to date in focusing on patient engagement in the proposed Stage 2 Meaningful Use regulations and the proposed Health IT Standards regulations.  It is our hope that the final requirements will be even stronger and more focused in this regard than the current drafts. As set forth in greater detail in the attached letter, we have a number of comments that we believe will improve the regulations and their use as a lever to improve patient experience, patient engagement, patient care and, ultimately, patient outcomes. We would like to highlight two in particular:

• We favor improving the likelihood that patients will access their data by allowing for some automation of the process of accessing and downloading patient data, using existing technologies that protect patient privacy and security.
• We also favor immediate patient access to information in the patient’s electronic health record – unless the patient has elected otherwise.

The overarching principle with respect to patient access to electronic health record data running through the entire meaningful use regulation and the health IT standards regulation should be:

“Nothing about me without me.”

The Society for Participatory Medicine has individual and institutional members nationwide and has a governing board comprised of both clinicians and patients. It was founded to study and promote participatory medicine, which we define as being centered on networked patients shifting from being mere passengers to responsible drivers of their health, and providers who encourage and value them as full partners. For further background on the Society and its activities, we invite you to see the Society’s website (http://participatorymedicine.org), its online journal, The Journal of Participatory Medicine (http://jopm.org) and its blog, e-patients.net.
____________

Thanks to everyone who helped put these together and review them on behalf of S4PM.

David Harlow, J.D. MPH, Chair, Public Policy Committee
Daniel Z. Sands, M.D. MPH, SPM President

================

Highlights, in my view – notes added later in the day (from Dave; emphasis added):

The letter to CMS (Medicare & Medicaid):

• “Information should be available to the patient and patents’ designees as soon as it is available to any clinical user of the CEHRT other than the author of the information itself.” Yes: what rationale is there for disallowing this??
• “A patient should have the ability to waive the right of access; a provider should not have the right to limit it.” Brilliantly said.
• “…the delays allowed under the proposed rules must be eliminated. Earlier access is technologically feasible, and there are other forces at work in the health care economy motivating providers to finalize these records accurately and completely as soon as possible. Once the records exist and are available to other clinicians via the CEHRT, there is no reason why an engaged patient should not have the ability to access them as well.” Brilliant!
• “…the proposed 10% threshold for patient engagement via PHR portals will not be easily attainable. The government is in a position to mandate or recommend pathways to improve the usability of patient portals, thereby easing the ability of eligible providers to meet a higher threshold of patient engagement … With convenient secure access for patient advocates and on-line services, usability would improve, and meeting the 10% threshold will be made easier.” Okay, I’m getting tired of saying “Brilliant.” So well said!
• “we would like to stress the importance of making the data available to patients in a way that would also enable the patient’s automated agents to access the data on their behalf, therefore making it much more likely that more patients would access EHR data online. The manual steps required in many PHR environments are in part responsible for the limited adoption of these potentially valuable tools.”
  • Yes, yes, yes! Every other industry knows, simpler stuff gets done more! And within e-health, we’re already seeing that passive / automated measurements get executed more reliably: Fitbit pedometers that upload their data automatically, Withings wifi bathroom scales and blood pressure cuffs, etc etc.
• “Most important, however, is making sure that those patients who want their data as soon as it is available in the EHR (i.e., with no delay) have that option.”

The letter to ONC:

• “… patients should have access to [all] the same [data] documents … as physicians and institutional providers. … patients and their family members or other designees should have the ability to review this information in real time — in order to serve as an additional check on accuracy, and in order to promote the broader goals of patient-centeredness.”
• “We recommend that “transmit to third party” also support widely available and secure protocols, such as the OAuth protocol … This will enable the patient to avoid inconvenience, delay and errors by providing to third parties limited access to the same information the patient can view and download.” Note the emphasis on how patients can help improve quality and reduce errors.  I would like to talk, personally, with anyone who opposes this goal.
• For diagnostic imaging: “…stream-capable hyperlinks to images that can be viewed in a typical web browser …
  • “…without the delay related to use of DICOM file transfer [these files are huge]…
  • “…and without the requirement to install additional software beyond the standard web browser itself.” [The more plugins you require, the fewer people will be able to do it, and the more compatibility problems you run into.]
  • “These links should be secure and accessible not only to clinicians, as the proposed rule would have it, but to patients and patients’ agents as well.”
    • Notice: the proposed rule says clinicians should have that, but patients don’t need it. SPM says, let patients engage with the information! I well remember when my primary (Dr. Sands) told me (9 a.m., January 3, 2007) there was something in my lung… he could see the image, at his home, and I hungered to see it too.
    • Note also that the last I heard (two years ago), my hospital was planning to only offer lower-res jpegs online, not the full diagnostic quality images the clinicians see. That’s disempowering and disabling. (I hope they’ve changed their view since then.)
• “… patient educational material needs to be …
  • “provided digitally and free of charge,
  • “actually delivered and not simply identified via a search function within the EHR.”
    • This is vital – one of the key objections I hear to patient engagement is “Most people aren’t smart enough – can’t do anything more than Google, and some can’t even do that.” To enable and engage patients, let’s GIVE the families the info they need, not say “You can go search for it if you want to.”
    • I personally would urge that each article have a “like / don’t like” thumbs up-down rating, too, so providers can find out whether patients are actually benefitting.
      • Among other things, this would give incentives to developers to provide higher-rated user-friendly materials, eh?
  • “… free of any advertising …
  • “produced either without sponsorship by parties with conflicts, or with full editorial control vested in the authors, not the sponsors.”
    • • This is so important – one of the first red flags about bad quality internet info is if the website is sponsored by a commercial party.
• “A way for patients to review e-prescriptions and participate in medication reconciliations with both their doctors and pharmacists via the patient portal. … will provide additional protections to patients with the ability to compare/confirm drug formularies and will eliminate paper waste and legibility issues.”

1. Minutes from last meeting

• The ONC is looking for patients panelists and  SPM Board of Directors Panelists for HDI in Washington, DC (Deb to follow up with Damon)
  • Alan, Sarah, Micheal, and Danny would be available to participate in HDI
• Institute for Patient-Centered-Family Care : a group that provides input to hospitals and feds on how to be more patient centered is also looking for SPM involvement (Sarah and Mike to follow up)

2. Seal update (Alan)

• Wire-frame and visual mock-ups passed around for review; platform development is on schedule.

5. Response to MU proposed rule (David Harlow)

• Adrian Gropper and David Harlow to review before May 7th
• Will we have time to run this by our membership?
  • We’re going to use the comments people submitted and enter those on their behalf.
    • Submitting individual comments on behalf of members is something the ONC has encouraged.
  • The formal response incorporates much of the dialog from the listserve and, as David is putting the final touches on the draft, he will encourage people to submit their own comments by posting the comment link to the listserve.
• A technical component of the letter is critical but we’d like to avoid they hyper technicalities O-Off / Daicom Standards (standard image storage) so the document remains focused on the theoretical aspects of patient centered design. This is in an effort to avoid misinterpretation and to prevent the Society from falling into the habit of endorsing specific technologies we don’t have the dedicated resources to research and track.

8. Executive Director Job Position

• Job description and salary to be discussed via email (John G.)
• In addition to fundraising responsibilities, aspects of this position will involve day-to-day Secretary tasks, consistent member management and various Treasurer duties.
  • John G. to stay on to begin training this position.

9. Elections

• Members at Large: Danny to send out note to full membership to nominate a list of members that will then be winnowed down (Deb to help draft and collect member responses)
• President Elect: Can be anyone (on or off board); needs to be voted on by the board; we welcome suggestions
• John G.: John stays on as Treasurer but exec director will take on large aspects of the role (Sarah and John G. to review)
• Alan G.: to reduce involvement but stay on as a Seal Director  and Board Chair; he will be in charge of running quarterly board meetings
• Deb L.: To step down as Secretary before Aug. to start grad-school. Members will be asked to nominate a new Secretary.

10. Member transparency on website

• You can see all the members even if you’re not a member on the website do we want to change that?
  • Yes -  restrict member access to members only (John G.)

We did not get to the following points due to an extended discussion on the upcoming MU Stage 2 deadline:

6. Panels and speakers procedure

7. Consulting engagement

3. Strategic planning (Sarah)

4. HIMSS relationship (Sarah)

11. Update that in lieu of board meeting we will send an update

12. quick follow-up on Mother Knows SPM discount/gift/membership dies

BOSTON — May 5, 2012 — The Society for Participatory Medicine, a group representing both clinicians and patients, urged key federal agencies to revise their proposed rules on electronic health records, saying that patients should have immediate access to medical information as soon as it is put into those electronic records.

The Society also expressed support for efforts by Society member Regina Holliday to protest an American Hospital Association proposal for a 30-day waiting period before patients can access that information.

“Patient engagement is the cornerstone of a successful, cost effective, and high-quality health care system,” said Daniel Z. Sands, MD, the Society’s president and a practicing internist. “Those goals cannot be achieved unless we give patients access to their own health information and encourage them to use it.”

The Office of the National Coordinator for Health Information Technology (ONC) and the Centers for Medicare & Medicaid Services (CMS) are seeking comment on regulations defining what actions hospitals must take in order to qualify for federal payments to encourage adoption of electronic health records. Those criteria, known as “meaningful use,” are meant to ensure that subsidies for health information technology help promote higher quality and more affordable care.

The first stage of Meaningful Use goals went into effect in April, 2011. Public feedback is now being sought on Stage 2 goals, including a set of measures related to patient engagement, that are expected to be implemented in 2013.

Sands praised the ONC and CMS for their commitment to engaging patients. The Society, meanwhile, emphasized in its comments that “the overarching principle with respect to patient access to electronic health record data… should be: ‘Nothing about me, without me.’”

“We favor improving the likelihood that patients will access their data by allowing for some automation of the process of accessing and downloading patient data, using existing technologies that protect patient privacy and security,” the Society wrote in formal comments to the government. “We also favor immediate patient access to information in the patient’s electronic health record — unless the patient has elected otherwise.”

Strengthening the proposed regulations can “improve patient experience, patient engagement, patient care and, ultimately, patient outcomes,” the Society added. (Full comments are available on the Society’s website.)

The American Hospital Association, in its comments, asked that hospitals be given 30 days after a patient is discharged to make available electronic medical record information to patients. In response, Society member Regina Holliday, an artist and patient advocate, has organized a demonstration to be held Sunday afternoon, May 6, in Washington, D.C., to coincide with the AHA’s annual meeting.
Although Society members who work in hospitals appreciate the concerns that led to the AHA’s stance, the Society supports this effort to persuade them to change it.

The Society for Participatory Medicine has individual and institutional members nationwide and a governing board comprised of both clinicians and patients. It studies and promotes participatory medicine, which it defines as networked patients shifting from being mere passengers to being responsible drivers of their health, along with providers who encourage and value them as full partners.

For further information, contact either of these Society representatives:
     Daniel Z. Sands, MD, President (dzsands@cisco.com) or
     David Harlow, JD, Chair, Policy Committee (david@harlowgroup.net)

SPM

Danny Sands

Alan Greene

Deb Linton

Michael Millenson

Sarah Krug

ONC

Lygeia Ricciardi

Damon Davis

Agenda:

1.       Introductions

2.       History and purpose of SPM (Alan)

3.       Strategic Plan (Sarah)

4.       Initiatives Sampling

5.       ONC consumer health priorities

6.       How we can work together (next steps)?

ONC consumer health priorities

• ONC focused on bringing HIT to hospitals and providers, e.g., meaningful use
  • Last fall ONC set aside some money for consumer health initiatives, one of 5 goals for ONC is “Engaging consumers and patients” represented by Lygeia, Damon, Erin

SPMs Guiding strategy:

1.       Access to information

2.       Making information actionable
Trying to support innovative tools

3.       Trying to shift attitudes

ONC Pledge program is a major initiative:

~300 data holder and non data holder orgs signed on

Immediate term:

The ONC would benefit from Meaningful Use comments that call for specific improvement but also support things that are right in rules. This pertains to individuals as well as groups.

Health Data Initiative: Lygeia running 3 hour consumer track within that about. Data Holder panel, non-data holder panel, “challenges” panel (old and new)…  Need patient panelists and SPM can help.

More on ONC broad agenda:

• Pledge program and SPM seal program may be complementary (one targeted towards individuals and one targeted towards organizations)
• 9/2012 public facing event highlighting interesting activities over past year (during health IT week).
• HealthIT.gov with section on patients and families
• SPM membership should be made aware of video contests, in which public can submit their stories as short videos and win cash prizes via Challenge.gov

Areas of Opportunity:

• Videos about experiences submitted by SPM members to these larger ONC Challenges
• Panelists at HDI conference
• Cross promotion of seal and pledge programs
• Developing content for HealthIT.gov
• Possible Challenge opportunity

Open Discussion:

Michael: Can SPM be represented at the table as materials are developed?

Damon: if there are issues SPM identifies as needing to be dealt with, ONC might crowdsource a solution to the problem.  Usually apps and tools,  but can have systems aspect to it.

Sarah: Patient-caregiver academy for newly diagnosed and not necessarily empowered.

To Do:

• Next call after HDI to not lose momentum (in June).
• Lygeia: might consider panel at HDI on Seal program (June 5).
• Damon to connect with Deb.
• Danny: send out Doodle for June timeframe for follow-up meeting.

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

Sarah K., Danny S., Alan G., John G., Michael M., Gonzalo B., Sue W.

1.    Minutes from prior meeting (Deb)

2.     Old business

a.     Year in review collection (Deb)

• no update
• Deb to schedule time with Danny to review a compilation of documents.

b.     Seal update (Alan)

• Platform to be built

• $10K Fred Trotter proposal to be reviewed by next week – Technical build is very focused on stories and sensitive to login preferences
• Call with Fred directly to discuss the details of the build timeline and incorporate this feedback (John G. Sarah, Alan, Fred are scheduled to be on that call before our next Exec meeting)

c.      Executive director (John, Sarah, Danny)

• Job description written up by John G.
• Exec team review and approval needed

d.     Strategic plan – NEEDS BOARD INPUT (Sarah)

e.     HIMSS webinars/partnership (Sarah)

• HIMSS would like to offer resources in exchange for co-branding with SPM
• This strikes at a concern about making sure SPM partners with the right group and don’t get appropriated.
• Discussions have continued and Sarah will be forwarding the MOU by our next call

f.       Evidence base collaboration and Mendeley (Gonzalo)

• We could use an update on this project because we didn’t make it to this agenda item

]]> http://participatorymedicine.org/2012/april-5-executive-minutes/feed/ 0 http://participatorymedicine.org/2012/march-22nd-executive-minutes/ http://participatorymedicine.org/2012/march-22nd-executive-minutes/#comments Thu, 05 Apr 2012 17:12:18 +0000 Deb Linton http://participatorymedicine.org/?p=948 Present:
Sarah K
Sue W
Michael M
Gonzalo B
Danny S
Alan G
John G
Deb L

1.      Minutes (Deb)

2.      Seal update (Alan)

• we’re considering 4-3 tents of the seal
• Advisory council aspirational
• Elise Singer MD MBA getting looped in
• John evaluating the tech to execute this – Fred Trotter has something he’s developing we’ll get a proposal by the next meeting

x.      MotherKnows (Alan)

• A potential corporate member – donating and encouraging $30 for each of their members to join

3.      Strategic planning update (Sarah)

• Evolving into a more evidence based organization that provides value add to members and corporate stakeholders through a research exchange . Where is the evidence that participatory medicine works? Literature bank will serve as a hub for existing literature that supports how things like patient engagement can translate into improved patient:HCP communication, leading to improved quality of care, outcomes, and lower costs, for instance.

4.      Lenox Hill Patient Experience update (Sarah and Danny)

Based on patient satisfaction survey, they wanted to develop an interactive curriculum to enhance the patient experience. They would like SPM and IHI (contacted by Lenox Hill) to develop a Patient Experience Curriculum for incoming residents by August. Ideally we could develop this into a replicable set of seminars where we HIRE SPM members and develop a revenue stream around spreading our message. We have yet to develop the details around the agreement. How do we become an indispensable piece of this relationship and protect our domain knowledge for derivative products.

Sue and Michael: Based on the publicly available information, what type of partnership might we expect from IHI and how can we best position SPM?

Deb: Tangential thought: We’re starting to see an increase in “patient centric” groups. It’s becoming harder to tell which groups are aligned with patient goals. As a result, SPM might find itself needing to take a stronger stance on particular issues and, to Michel’s point, picking it’s partners carefully.

Sue: We should not miss out on this incredible opportunity – especially coming from a health system

Michael: we could really showcase our strength of patient clinician partnership with this approach – this is not just another one off seminar and SPM has something truly unique – we’re ALL about the patient.

5.      Executive director (Danny, Sarah, John)

• John to draft up job description

6.      Year in review collation (Deb)

• Deb to propose plan of action

7.      HIMSS partnership discussion (Sarah)

• HIMSS non-profit application for groups that might help them become more patient centric. If we put together a resource kit, webinars, or other patient empowerment tools they could help sponsor
• But then again so can other groups that might allow SPM more autonomy
  

8.      Establishing an evidence base repository (All)

Mendeley as a way to share documents and involve members in literature review process. We’d ultimately like to create a literature bank. (Gonzalo)

Sue: The issue of collating SPM-relevant evidence is very important. Lots of studies are out there –  in a variety of places and with a variety of ‘quality’

What are our goals with this? Perhaps: (1) informing members, so they can use the literature to advocate/inform, and (2) use the literature as part of ‘new’ endeavors, such as educating residents

Deb: We want something that all of our members can contribute to and, in the future, someone can later go through the papers and edit for quality. We’ll evaluate the user-generated “publish first edit later” approach.

2.      Election results and action steps (Danny)

3.      Seal update (Alan)

4.      SWAG at HIMSS (John)

5.      Strategic planning update (Sarah)

6.      New business opportunity?  Consulting services. (Sarah)

Absent: Deb, Gonzalo

Meeting starting late due to confusion about meeting info: new info sent–please delete old! Reminders didn’t go out because Listserv does not seem to be working. John to investigate.

Board meeting 1/19/12:

• David Lansky (to be confirmed), Cheryl Greene, Paul Wallace rotating off
• At meeting, we will elect board member (1) (3 year term)
• Founders will elect 1, via email (3 year term)
• In July we choose 2 members-at-large–Alan proposes plebiscite for this (1 year term)

• Alan proposed advisory board of former members– they would be ambassadors

• Who will own this?
• Does this add confusion about our governance structure (exec committee, board, founders, etc.)?
• Should it be voluntary?
• Concern about having board members who are committed and would work

• We don’t have a board chair as of Board mtg when Dave steps down

• Should board elect a new chair at this meeting? Or should president take this on?
• When will voting take place and how do we get folks info about candidates? Alan dropped off so Danny e-mailing him. *** Alan says we’ll have discussion and if natural leading candidate stands out we can vote but otherwise will follow with an e-vote. We’ll get bio sketches and maybe paragraph or two personal statements from each candidate and distribute.

• Jon L stepping off of communication team: Ilieana Balcu will be taking over
• Strategic planning: Sarah and Nancy doing interviews now.
• ONC: mtg TBA with Sarah, Alan, and Deb and me from SPM and Lygeia and company from ONC

4 SPM pillars defined. Intent is to define pillars that support SPM mission with intent of understanding all initiatives underway/planned and categorizing them accordingly.

I. Research (Sarah/Sue)

Provide a participatory medicine forum for collaborative research exchange and evidence based practice project collaboration.

a. Research Library-hub for existing literature

b. Research Engagement-SPM member involvement in future research

c. Journal

Comments:

Journal needs to be further tied to SPM brand, while maintaining editorial independence. Many not aware that they are connected. Twitter accounts are separate for instance. Is there a way to integrate? Can we make full access to the journal a value of membership with limited access to non-members?

II. Education & Resources

Provide resources, reference tools and best practice standards that support participatory medicine.

a. Best Practices (idea?) Call to Action from members–both docs and patients: simple steps and examples that we may be doing or stumble on through research that promote how to adopt participatory medicine into practice.  What simple steps can a patient take to become more engaged in their care and what can they do during the clinical encounter to allow for a more successful partnership? What simple steps can a dr. (or members of the healthcare team) do to engage their patient? White paper summary.

Simple ideas like a dr writing 3 questions on a whiteboard in the exam room where patient is prompted to ask/remind the dr to address certain issues.

b. Blog (needs to be more tied to SPM)

c. CME (David Harlow)

d. Resource Repository

– Healthcare system Overview- there are so many rich discussions that take place on listserv and often times complex interfaces are discussed. Would be a great to have a broad healthcare system overview (everything from drug and development within pharma to how insurance works to cover costs of care), healthcare reform in a nutshell, and even a data dictionary where certain terms can be housed (What is HIMSS? What is CMS? What is ONC?)

–How to be an e-patient

–Tools and advice for patients  (e.g.“You’ve been told you have cancer, now what?” )

e. Journal

f. Ambassador Program-Training with standardized PowerPoint decks (toolkit) to be used by SPM volunteers that agree to be representatives and speak at conferences and webinars to raise awareness around participatory medicine movement.

f. Guidelines (Alan Greene)

g. Webinars with guest speakers

III. Advocacy & Policy

a.Gold Seal Program-(Alan Greene)

b. Summary of Call for Comments (David Harlow) – commentary on proposed Federal and state legislation and trying to influence policy in other ways. Summary of all work that’s been done to date in one place with a background statement/history outlined, SPM’s commentary, and then final outcome of policy.

IV. Community

Encourage collaboration and networking among members and organizations who are ambassadors for the participatory medicine movement.

a.    Discussion board ( idea?)–NEED SOLUTION FOR LISTSERV

Is there a way to maybe have initial email sent out where all responses get captured on a blog or web based archive where members can go voluntarily? The other advantage of having conversations archived on website rather than on email is that similar issues can be referred to the website.

b. Events (Idea?)

c. YouTube platform (Why I joined SPM?)- A video campaign that raises awareness around SPM through Twitter and Facebook etc.

d. External Communication Plan

e. Speakers database

f. Partnerships with other orgs

g. Social Media Outreach

Comment:

IV Governance

The Strategic planning effort must look at the structure of SPM. the board, the editorial board, the interface between all the arms of the organization. If the organization is not efficient, well structured and sound, these initiatives and agendas will not get off the ground and cannot succeed.  It seems to me as a 501c3 we must have some bylaws and a governance structure and that needs to be reviewed and probably revised to reflect a stronger more intricate organization that can accomplish what we have set out above.