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Rachael Fleurence on Patient Engagement



April 3rd, 2013

Editor’s note: The February issue of Health Affairs was a thematic issue focused on patient engagement. In conjunction with the Patient-Centered Outcomes Research Institute (PCORI), the journal has launched a new initiative inviting questions from patients and others via Facebook for Health Affairs authors on patient-centeredness and patient engagement. Questions are then answered on Health Affairs Blog.

Last month, patient advocate and cancer survivor Jessie Gruman answered questions. Watch for a Health Affairs Facebook post tomorrow (Thursday) soliciting your questions for Ming Tai-Seale at the Palo Alto Medical Foundation Research Institute in California. She will answer her favorite questions next Wednesday here on HA Blog.

Today, we feature Rachael Fleurence, a Senior Scientist at PCORI where she leads the research prioritization initiative to help identify important patient and stakeholder generated questions and establish a rigorous research prioritization process to rank these questions.  (Also, check out her recent blog post and follow the link to her February Health Affairs article here.)

 

Q. I listened in on the PCORI Patient Falls ad hoc workgroup teleconference. The research proposals began from a set that reflected providers’ thinking about what would best benefit patients; the call leader, referencing proposals that had been received from consumers and industry, brought research on the ability of technology interventions into the mix but none of the researchers seemed to grab hold of that idea. Perhaps PCORI should specifically include remote patient monitoring as a class of interventions to include in deliberations? — Peg Graham

A. Great recommendation, Peg.  We are very keen to hear about topics for research from the community. As you know, we are here to conduct research that will generate information to help patients, their caregivers and their health care providers make better-informed health and healthcare decisions. Further research on remote patient monitoring would be a great topic to propose for further research. We ask that you, and everyone out there with ideas for research topics, to submit them on our website.

On another note, I’m pleased you were able to join us for our Treatment Options for Back Pain and Falls workgroups. I hope you will be able to join our next workgroup, Obesity Treatment Options In Diverse Populations on April 16 and share your ideas with us during the webinar/teleconference.

 

Q. I would like to see some more attention being given to patients with a terminal diagnosis. I would like to see the quality of life improve for patients who are on hospice versus those who are not. Do you think that educating terminal patients about hospice is important to their quality of life?  Do you have any other thoughts related to this? — Brandi James

A. We are interested in hearing about all topics that people in the community feel should be further researched in order to improve the evidence available for patients, caregivers and clinician when making critical health and healthcare decisions. In December 2012, we approved funding for  an interesting study out of the University of Rochester that addresses the subject you mention.  Dr. Helena Temkin-Greener is conducting the first randomized controlled trial to evaluate the impact of palliative care teams on resident and staff outcomes, and care processes, in nursing homes. That project, like all of those our Board considered in December, was approved pending a review by our program staff. To learn more about this study, and the others our Board approved, please visit this page.

 

Q. I’ve observed a “for-profit” bias against start-ups within the traditional healthcare research community. Putting aside the question of whether or not this bias is justified (because it may be), the renewed call for human factor input into assistive device design, research and development makes the need for partnerships between Academic Medical Centers and new product developers more important than ever before. STTRs/SBIRs reach only the tip of the iceberg, since many assistive device development efforts never get off the ground due to the lack of academic interest (which does not always take the interests of patients and their caregivers into account). Does PCORI attempt to build bridges between these two worlds? — Peg Graham

A. We are interested in studying all types of interventions that will make a difference to patients, their caregivers and their health care providers. If you think that a particular assistive device should be the topic of further research, please do submit this topic to our website.

 

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