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.

Dec 1st, Thurs, Noon – 1p EST

• Defining 4 pillars – a tool to help us better understand the existing activities to further define our strategy : (Sarah K)

1. Research – establishing a research exchange and practice collaboration (perhaps developing a research library and integration of the )
2. Education and Resources: Establishing best practices, information for ambassadors, meetups, questions patients can ask
3. Advocacy and Policy
4. Community: creating a solution for the list serve so it’s less overwhelming  and partnerships

• Link to working document to be posted HERE

• What are ways to clean up our community and the overwhelming list serve?
• Hosting webinars – Could offer formal stage and structure to our existing open dialog – successful president set with Tweetchat (Thank you to Marcela for the Tweetchat efforts)
• Can we launch a member survey? What information would be useful
• Regional Ambassadors
  • We might be able to craft some rules around this
  • Dave and Sarah taking this on
• Seal Program and Board Reconstitution to be discussed next week

———–

Original Agenda

1. Seal program status—defining programming needs (Alan)-Alan not able to attend, tabled to next meeting

2. Board Reconstitution -Alan not able to attend, tabled to next meeting
3. Strategic Planning-all ok with pillars but will review document and provide preliminary comments. (link to DRAFT)

4. SPM Webinars-all ok with concept. Danny-Can CISCO provide webinar capabilities? What committee will coordination fall under?

5. Regional Ambassadors -all ok with volunteers who are willing to spread awareness in respective region. Dave had proposed someone from Greece. Discussed need for clear description of role. This will eventually morph into a more formal but simple training, which consists of standardized decks that can be used at meetings, etc.  Dave, not sure if I recall this correctly, but didn’t your contact offer to draft a description? If so, might be a good start!

6. Other – Discussed sending out survey to members to understand what is greatest value of SPM? What are priorities? This will help with strategic planning. Sue offered to help with survey. Also discussed understanding which members did not renew. Understanding rationale for non-renewal can also feed into strategic planning process. Jon will send out non-renewal report. Discussed issues with overwhelming amount of information distributed through listserv. What are solutions? First step-might be simple education around changing frequency settings. This was also discussed on listserv today. Should we pull a team of volunteers together to address this?

• Want to make the database something that can be queered with the potential of  plug into other organizations physician search (that we could bring in as corp members)
• It’s going to live on spm.org / do we have a user experience designer / journal template
• Lygeia would like to go after Yelp, Health Grades, Healthline, best doctors etc to get them using the seal
• There might be a potential
• Alan to put together project plan

Board Reconstitution:

• We’ll need some people to rotate off  and need to identify new people
  • Next call we need to know new people
  • Second to next call we need to settle on a plan
• Chairmen of the board / Prez Elect to run meeting (Danny to follow up on that)

Social Media Update:

• Difficult to pull people together given that they’re working in multiple timezones and off volunteer time
• Original plan
  • Only baseline stuff has been accomplished because we need more consistent work
• Twitter Chat
• Nancy Finn (Sarah and Emily Hackel) working on corp engagement
• Basecamp being used to coordinate

Update:

Link to actual PDF of submitted letter

SUBMITTED ELECTRONICALLY VIA REGULATIONS.GOV

Centers for Medicare & Medicaid Services

Department of Health and Human Services

Room 445-G

Hubert H. Humphrey Building

200 Independence Avenue, SW.

Washington, DC 20201

Attn: CMS-2319-P

Re:            Medicare, Medicaid, and CLIA Programs; Patient Access to Laboratory Test Reports (CMS-2319-P)

• Boston event. Planned efficiently by Ann Rosas. Site was well priced but otherwise not the best. Fantastic evening. Amazing chemistry in the room, like a dinner party. Great conversation. Tom del Banco (sp?) gave a great address. Filled to capacity. Danny thinks we have some orgs that are interested in joining SPM – corporate memberships.
• Emily Hackel was running the discussion and taking notes, trying to figure out messaging.
  Several things came out from a number of orgs. Chicken and egg: if you can prove that it works, sign us up. If we could do research, that might be useful. Seal program is attractive to healthcare orgs. Alan says similar responses at San Francisco event.
  Sue: What is it that they think needs to be proven, that is not proven yet? Danny: agree on that point. The problem that we have is we’re not really a research org, but we can encourage research through journal and be a repository of the research. An aggregator (Jon’s word). We can help researchers.
• Had some orgs that were interested in potentially joining. Emily Hackel of Edelman ran the discussion and took notes. Three take-aways re potential members’ interests -
  • It’s something of a chicken and egg situation
  • Interest in our doing research to show PM works
  • Our PM Seal idea was interesting
• Discussion: Sue Woods asks: “Show it works?? There’s lots of research on all aspects – what do they think is lacking??” Danny: Yes; we could be a sort of repository of such research. Dave: What?? T Danny: we could put forth a series of grand challenges. More important to prospective members would be an annotated list of references.
• Who will take the lead in aggregating the research? (Perhaps this could be a member benefit – research briefings.) Dave? Not in a position to do so – Feed him info and I’ll broadcast it. — Sarah and Sue will co-lead it. Danny: Let’s start slow due to people’s busy lives.

2. Research

Lead doing a literature review  – annotation – Sarah & Sue co-leading Dave and Gonzalo

Raising awareness around research in PM – annotated research list

Dave: puzzled after 2 years of this, talking about having a research agenda, and we’ve heard that people want it. Why wouldn’t we be a research organization? Danny: not our core competency, not an academic organization, no resources to do research. We could propose grand challenges, a research agenda for others to follow. Have an annotated reference list of research that would be searchable. Curation is a role we could play.

3. Seal update:

4. Board reconstitution: 3rd thurs of January at 12noon EST

5. Social Media Update: (Jon L.)

The Society’s Communications Team met 11-1-11. Notes on that meeting:

1.Planning for next full board meeting (Alan)

• Alan to message board about new Board Meeting time

2. SF Dinner Salon Redux (Danny, Alan, Sarah)

• Emily Hackle and Nancy Finn being brought in to help us improve our value proposition
• Blue Shield expressed interest in using SPM seal to restructure aspects of patient care

3. Boston Dinner Salon status report and call to action (Danny)

4. ONC conversation

• SPM announced the seal at Health 2.0!
• Lygeia Ricciardi approached Alan after and was enthusiastic about establishing a relationship between SPM and the ONC
  • Lygeia suggested SPM work on patient and providers while the ONC focuses on institutions

• Reactions:
  • We don’t see the ONC as a competitor but we don’t want to duplicate efforts and should engage them in some way regardless
  • We want to think about maintaining the SPM brand and coordinating our message in the long run
  • Any relationship with the ONC would take a great deal of time commitment because they operate at a very different pace that SPM
  • Could we co-host each others seals with a clear definition of how each institution supports each other?
• We want to move quickly and get a draft together for the ONC (Danny)

5. Capturing the story of Alan’s friends

• JOPM to record it
• We could use it as a use case for capturing and recording other patient stories
• There might be some partnership with Health 2.0 TV

6. Digital health coalition e-patients bill of rights wants to align with SPM’s mission

• Deb still wary of what this means for SPM  brand
  • Sarah clarified explaining their different take on e-patient and how they might be changing the name to something other than “bill of rights”
• They seem well on their way to creating a tool kit similar to what SPM had plans to develop
  • Alan frames it well : It would have been great if SPM had already accomplished an e-patient tool kit – The second best thing would be for us to gear up and create it right now -  But it’s important to note that a tool kit is going to happen anyways and we should aim to be apart of it.

7. CME Module (Sarah)

• As exec board liaison, Sarah will work with Nancy Finn and others to discuss collaboration with other e-patient groups
• Exec board in support of developing an SPM CME program
• This team will also look in to the industry funding or grant opportunities that might exist if we are able to establish CME

Misc.

Patients Association in Canada  has partnered with another organization to produce a seal program call Patient’s Choice awards. What can we learn from this? How are we similar? How are we different? Should we partner?

http://patientsassociation.ca/patients_choice/patients-choice-awards

http://patientsassociation.ca/

• Sarah reported that Klick Pharma is donating $1000 to SPM following a FitBit challenge.
• Emily Hackel from Edelman has accepted role heading corporate marketing.

In the area of fundraising and possibly hiring an executive director, Sarah suggests considering a professional fundraiser, who keeps percentage of funds he raised.  Danny concerned that their earnings potential from our meager membership fees may not attract anyone.  We agreed was worth investigation.

Discussed status of salons.  SF on 9/26 is oversubscribed thanks to push by David Lansky.  Boston invitation is just going out.

Discussion about proposed SPM guidelines announcement at Health 2.0 (submitted by Alan):

• Overall, concept is good, and okay to do an announcement, but…

• 10,000 clinicians may be a lofty goal.  Concern that we are aiming too high.  Perhaps less specific or 10,000 in n years

• What is the process? Are providers on board?  Dave suggested that clinicians participate in forming details of goals once they are nominated

• Are these aspirational goals?  Need more detailed objectives if not.  May take a long time for physicians to achieve these goals.

• Once we start this program, other organizations might help us promote these guidelines

• Call them “goals” and not “guidelines.”

• Consensus that this is good forum to announce, but less detail around what they are other than a statement of principles.

• Maybe keep 10,000 clinicians as goal but not in a year.

• Sarah: mission of SPM is to bridge gap between patients and healthcare professionals.  How about a goal of encouraging questions from patients?  How about ensuring that patients understand treatment options?

Sue: No work yet on relationships with other organizations.  She plans to build off of the value proposition.  Danny suggested mapping related organizations, perhaps in a Venn diagram based on organizational focus as a first step.

Group liked membership proposals from Maria, especially the discounted e-Buddy for cancer or other diseases.  Comment that a free $30 membership may not be anough motivation to recruit members.

Sarah: people who are members want to know how they can participate.  Pointed to News section of site and Cheryl as volunteer organizer.

Some of our initiatives may be redundant.  Can we have clarity around their interrelationship and timing?  We discussed how initiatives are vetted by the exec committee to ensure that they do not conflict, overlap, or are nonstrategic.

Meeting adjourned at 1:02pm.

Some of the physician commentariat have already come out against this proposal, saying patients lack the context/knowledge with which to interpret results, and may mistakenly (a) ignore a result that may warrant some worry – and followup, or (b) worry unnecessarily about a benign result.

Please reply to me privately if you are interested in working with me to craft the Society’s comment letter, which is due in mid-November.

– David

David C. Harlow ∙ Principal