Transform Health Arkansas: A Transgender-Led Partnership Engaging Transgender/Non-Binary Arkansans in Defining Health Research Priorities
For which topic were research priorities identified?
In which location was the research priority setting conducted?
North America - USA
Why was it conducted at all?
Transgender/non-binary (trans/NB) individuals face major challenges, including within health care. Participatory research approaches with trans/NB individuals have succeeded in improving recruitment and retention, quality of information about lived experiences, and appropriateness of intervention designs. However, continued exploration is needed to better understand how participation can truly enhance empowerment and capacity.
What was the objective?
to engage the trans/NB community in defining their most pressing health and health care concerns
What was the outcome?
a list of 17 research question
How long did the research prioritization take?
July 2015 - April 2016
Which methods were used to identify research priorities?
How were the priorities for research identified exactly?
Step 1: 9 meetings: to generate dialogue, build relationships and discuss the most pressing health concerns of trans/NB Arkansans, story-telling exercise to get participants thinking about their health concerns, participants were asked to write about positive and/or negative health care experience, then asked to select one story that especially resonated with them, collating of topics, followed by small group discussions: to discuss topics and note research questions, participants were asked to rank top 3 questions. Step 2: survey: owing to concerns that sample did not capture diversity of trans/NB population and to allow for input from individuals who were unable to attend, survey asked trans/NB individuals and allies to list up to five transgender health or health care-related issues they were the most concerned about and they would like this research group to focus on. Step 3: data processing: content analysis of survey submissions, data integration with meeting data
Which stakeholders took part?
Trans/nb individuals. Survey: 140 participants. Meeting: 54 trans/nb and 29 cisgender individuals.
How were stakeholders recruited?
Several locations with local trans/NB leaders were selected and information about the summits was shared through their networks, as well as through Facebook, email, the ArTEC website, LGBTQ organizations, PRIDE events, and word of mouth. Trans/NB individuals were encouraged to bring cisgender allies, including partners, health care providers, and other community members, to the summits to participate in a separate discussion and receive education about transgender health.
Were stakeholders actively involved or did they just participate?
Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.