{"id":13954,"date":"2012-12-30T10:00:03","date_gmt":"2012-12-30T15:00:03","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=13954"},"modified":"2012-12-31T12:24:00","modified_gmt":"2012-12-31T17:24:00","slug":"pcori-and-just-in-time-decisions","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2012\/12\/pcori-and-just-in-time-decisions.html","title":{"rendered":"PCORI and Just-in-Time Decisions"},"content":{"rendered":"

\"Danny<\/a>SPM member Danny van Leeuwen @HealthcareHats<\/a>is an active member of PCORI’s patient engagement workgroup. A month ago he mentioned a post about PCORI on WBUR’s CommonHealth blog,\u00a0Medical Research: By Law, It\u2019s All About You<\/a>. I said “You should make short blog posts about things like this!” And he did.\u00a0<\/em><\/p>\n

SPM members are welcome to write about relevant topics for our blog. Non-members, join here<\/a>.<\/em><\/p>\n

    \n
  1. Is there a chance that focus beam brain radiation will make a difference to quality of life for a terminal patient?\u00a0<\/span><\/li>\n
  2. Will the treatment prescribed cause depression?\u00a0<\/span><\/li>\n
  3. Will acupuncture make a difference?\u00a0<\/span><\/li>\n
  4. Will all this attention to one family member negatively impact the other members?<\/span><\/li>\n
  5. What do I do when my doctors disagree?<\/span><\/li>\n
  6. Can we afford……?<\/span><\/li>\n<\/ol>\n

    Making a decision based on evidence at the time decisions are needed is a challenge for e-Patients and e-Caregivers. Participating in PCORI<\/a> (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.<\/p>\n

    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:<\/p>\n

    Expand the scope of fundable research questions to include non-diagnosis related questions:<\/strong><\/p>\n