Patient Engagement Work Group 

SWOT Analysis - Strengths, Weaknesses, Opportunities, Threats

APPROVED: April 2, 2020

(See exemplar SWOT from the Financial Management workgroup)

Note: scope of the analysis should be a 3 year look-ahead, but it's reviewed/updated annually.  (Is it accurate to call this a rolling three-year window?)

Strengths

  • Passion for improving FHIR (and all of health IT, and all of healthcare) by injecting the patient point of view
  • Unprecedented moment in time, where consumers / patients have access to tools and some are starting to innovate on their own
  • Strong philosophical support for patient empowerment from many HL7 members (especially strong at DevDays)
  • Several WG members (Work Group) have a strong presence in the field (conferences and social media)
  • Several WG members are good developers - able to speak on feasibility of ideas, create reference implementations
  • Good high-level support in HL7 for the underlying mission of this group

Weaknesses

  • Immature workgroup (new)
  • Not enough participation yet from outside US
  • Several members and co-chairs are not well steeped in HL7 methods

Opportunities     

  • Strong government support for patient access & policy mandating use of FHIR
    • US: this climate has created much greater interest in person-centered care than ever before
      (especially March 2020 ONC & CMS rules related to the 21st Century Cures Act); proposed HIPAA replacement. 
    • Europe: GDPR and the MyData movement
  • Growing demand for patient-controlled data sharing, among activist patients and some organizations. Sometimes called "Consumer-directed," "Patient-mediated," etc.
  • Stir discussion within HL7 of the patient story collection that began on the e-patients.net blog, now hosted at Unblock.Health
  • Many/most HL7 WG's need additional contributors on patient point of view
  • Increased interest globally in data security, human-centric data economy: GDPR etc.
  • Healthcare is being digitized, people are empowered by this anyway.

Threats       

  • Cultural tradition in the industry - many (especially commercial interests) who think patients should be inert recipients of care,
    patients don't know what's important, etc.
  • Pushback against interoperability from American Medical Association, American Hospital Association, and some system vendors
  • Patient perspective (for any individual patient or instance) may be quite narrowly focused. We need to figure out
    how to both invite a diverse set of patient experiences and manage that concern so contributions have appropriate general relevance.
  • Bad things surely will happen sooner or later, and opponents of the movement will capitalize on them to discourage the movement
  • We hope to encourage public participation, and organizational methods & processes could be a barrier
  • No labels

2 Comments

  1. Mikael Rinnetmaki

    For me it would be OK to be more direct with the last point. A majority of the newcomers to HL7 have found the methods and processes of HL7 difficult to grasp. We should keep in mind that a big part of people participating in the work of this particular work group may not have any background in standards development.
    I kind of liked the earlier version. Something like:

    HL7 has its established methods & processes, and this may be alienating for newcomers and a barrier to public participation.

  2. Rachel Richesson

    These look really good.  Nice work! A few comments:


    Under strengths, I wonder - are we limited to FHIR or are we really about enhancing "all HL7 interoperability standards including FHIR"?   

    Also, I think we have passion but also I would add a bullet that the our "PEW members are tied into patient communities (broadly speaking) and can tap into needed expertise and perspective as needed for particular projects."


    Finally, as a threat, I would add specifically that "many current HL7 members and working groups might perceive that involving patients will slow them down and perhaps be distracting, difficult, or uncomfortable."  (I think this is important to call out because then we can address communication styles and standard approaches that can overcome that perception.)


    Another possible opportunity would be that PEW/patient voice can help workgroups build standards and supporting material that are more relevant, complete, and useful for patients - and ultimately clinicians, and the organizations (e.g., health care delivery, insurance) that pay for the commercial products that use these standard. 


    Apologies in advance but I will have to be late to the call on Thursday.  Stay safe!