Focus Groups 2017-2018

Building on what we learned at the initial retreat, and supported by a PCORI Tier II pipeline-to-proposal award, we conducted a series of focus groups at Support for Families in San Francisco and UCSF BCH Oakland to develop and prioritize research topics and research questions that matter to patients. We utilized the James Lind Alliance Priority Setting Partnerships method, which has been demonstrated to be effective for achieving robust patient and public involvement in health care research. We recruited 5 cohorts that consisted of patients and caregivers for a two-part focus group series and discussed their concerns regarding the future health and care of people living with a chronic illness. Together the groups articulated 300 draft research questions, which were grouped into 16 different thematic topics for researchers to purse. The topics and the draft research questions were seperately prioritized within in each cohort. We were gratified to see although the patients and caregivers that participated in the focus groups were experiencing different medical conditions, there was significant agreement on priorities, and they were able to work together collaboratively to develop a single ranked list of priorities as a group. 

*More information on our recent work is to follow after publication of our paper.