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Danny van LeeuwenSPM member Danny van Leeuwen @HealthcareHatsis an active member of PCORI’s patient engagement workgroup. A month ago he mentioned a post about PCORI on WBUR’s CommonHealth blog, Medical Research: By Law, It’s All About You. I said “You should make short blog posts about things like this!” And he did. 

SPM members are welcome to write about relevant topics for our blog. Non-members, join here.

  1. Is there a chance that focus beam brain radiation will make a difference to quality of life for a terminal patient? 
  2. Will the treatment prescribed cause depression? 
  3. Will acupuncture make a difference? 
  4. Will all this attention to one family member negatively impact the other members?
  5. What do I do when my doctors disagree?
  6. Can we afford……?

Making a decision based on evidence at the time decisions are needed is a challenge for e-Patients and e-Caregivers. Participating in PCORI (Patient-Centered Outcomes Research Institute) and SPM heightens my awareness of the importance of evidence for decision-making and the misalignment of much evidence with the decisions facing us.

The medical model of research favors a focus on body parts, diagnoses, and medical treatments. The dissemination of that research favors positive results and academic journals. No access to what didn’t work; for that, we need to rely on advocacy groups and social media for readable and understandable evidence. Recently, several of us made a proposal to the PCORI Board in Boston:

Expand the scope of fundable research questions to include non-diagnosis related questions:

  • Identify mechanisms and key success factors of patient-professional partnerships, patient engagement (actions individuals must take to obtain the greatest benefit from the health care services available to them), care coordination, shared decision-making
  • The impact of peer-to-peer (patient-to-patient, family-to-family, caregiver-to-caregiver) relationships
  • The impact of social determinants (conditions in which people are born, grow, live, work and age, including the health system) on best health

What do you think? What small interventions will make a big difference here?

Observation from Dave: I’m almost glad it took a month to get around to posting this, because now it takes on a whole different feeling in light of yesterday’s post about the new Dutch experiment with patients wanting to not just comment on outcomes discovered in research, but wanting to influence what gets researched. See the difference?


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