- Is there a chance that focus beam brain radiation will make a difference to quality of life for a terminal patient?
- Will the treatment prescribed (any treatment) cause depression?
- Will acupuncture make a difference?
- Will all this attention to one family member negatively impact the other members?
- What do I do when my doctors disagree?
- 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 Initiative) and S4PM (Society for Participatory Medicine) heightens my awareness of the importance of evidence for decision-making and the misalignment of much evidence with the decisions facing e-Patients and e-Caregivers. 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. 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 are the magic levers for this change?