SPM 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.
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- 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 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 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?
Hi Dave and Danny. Thanks for this post, and those to come on the subject! I just joined PCORI as a stakeholder/reviewer (caregiver) and I really look forward to reading and learning about proposals such as this. My particular interest, which I think meshes with the questions you pose, has to do with increasing awareness of the *costs* to the patient of treatment decisions.
By awareness, I mean in the minds of HCPs, and by costs, I don’t mean what we pay the hospital or the doctor or the health insurance company (lots of folks are already paying attention to those), but rather the cost of, say, traveling to a distant city to see a specialist, or the cost of having appointments canceled after you take off from work (and lose wages), or the cost of finding special food to keep you alive through your chemo, etc. I consider these questions a part of the larger issues of communication between HCPs and patients. These costs should directly impact decision making, but they are often completely invisible until the patient has already made their decision and must simply cope.
I can’t help but think that when HCPs and HC entities don’t know about or care whether or what their suggested treatment will cost you in time and money, you are less likely to adhere to the prescribed regimen, and very likely you won’t survive and thrive as readily either. It seems like a very testable concern, and I hope to have the opportunity to review and recommend proposals that in some way help to address this problem.
In terms of your questions, I do think small interventions can make big differences. For example, I have found it essential as a caregiver to be in the examining room with my “caree”. It is very difficult to articulate how you feel in a few short sentences, but doctors often get impatient. On the flip side, it is also hard to understand the doctor’s questions, answers, and recommendations when they use medicalese and speak quickly and without obvious concern for whether the patient has understood. As the caregiver, I try to help fill in on both sides, helping the patient describe problems and helping the doctor describe treatments and prescriptions. I’d like to see a study that evaluates the amount of information conveyed in office visits with and without a caregiver in the conversation. Perhaps such a study could confirm the value of a caring third party in the overall quality of decision making and compliance.