Dataset Information

Involving patients in clinical research: the Telescot Patient Panel.

ABSTRACT:

Background

To date, patient involvement in the development of clinical research work has been limited. In 2011, the Telescot research team commenced work on a feasibility trial to investigate home telemonitoring of blood pressure for people who have experienced stroke or transient ischaemic attack (TIA). The team decided to involve patients in the development of the research.

Objectives

To improve research design through patient involvement.

Method of patient involvement

A modified form of the 'Scrutiny Panel' approach was used to involve people who had stroke in the research project.

Results

The Patient Panel supported the research in three key ways: it informed patient communication; it presented patient perspectives on the applicability and usability of the intervention; and it guided the development of the qualitative study.

Discussion

The initiative was considered a positive experience for all. However, challenges were identified in terms of the time and cost implications of undertaking patient involvement.

Implication for research practice

Importance is attached to adequate project planning and development, partnership working with community-based organizations and the necessity for clear role delineation between patients and professionals to enable effective collaborative working.

Conclusions

The Telescot Patient Panel was beneficial in supporting the development of the feasibility trial. The Panel approach was considered transferable to other clinical research contexts.

SUBMITTER: Fairbrother P

PROVIDER: S-EPMC5055252 | biostudies-literature | 2016 Jun

REPOSITORIES: biostudies-literature

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Publications

Involving patients in clinical research: the Telescot Patient Panel.

Fairbrother Peter P McCloughan Lucy L Adam Geraldine G Brand Richard R Brown Cecil C Watson Mary M Cotter Nicola N Mackellaig Juliet J McKinstry Brian B

Health expectations : an international journal of public participation in health care and health policy 20130930 3

<h4>Background</h4>To date, patient involvement in the development of clinical research work has been limited. In 2011, the Telescot research team commenced work on a feasibility trial to investigate home telemonitoring of blood pressure for people who have experienced stroke or transient ischaemic attack (TIA). The team decided to involve patients in the development of the research.<h4>Objectives</h4>To improve research design through patient involvement.<h4>Method of patient involvement</h4>A ...[more]

PMID: 24112277

Similar Datasets

Project description:BackgroundThe purpose of this formative study was to assess barriers and facilitators to participation of transgender and gender diverse (TGD) patients in clinical research to solicit specific feedback on perceived acceptability and feasibility of research methods to inform creation of a multisite longitudinal cohort of primary care patients engaged in care at two community health centers.MethodBetween September-November 2018, four focus groups (FGs) were convened at two community health centers in Boston, MA and New York, NY (N = 28 participants across all 4 groups; 11 in Boston and 17 in New York). FG guides asked about patient outreach, acceptability of study methods and measures, and ideas for study retention. FGs were facilitated by TGD study staff, lasted approximately 90 min in duration, were audio recorded, and then transcribed verbatim by a professional transcription service. Thematic analyses were conducted by two independent analysts applying a constant comparison method. Consistency and consensus were achieved across code creation and application aided by Dedoose software.ResultsParticipants were a mean age of 33.9 years (SD 12.3; Range 18-66). Participants varied in gender identity with 4 (14.3%) men, 3 (10.7%) women, 8 (28.6%) transgender men, 10 (35.7%) transgender women, and 3 (10.7%) nonbinary. Eight (26.6%) were Latinx, 5 (17.9%) Black, 3 (10.7%) Asian, 3 (10.7%) another race, and 5 (17.9%) multiracial. Motivators and facilitators to participation were: research creating community, research led by TGD staff, compensation, research integrated into healthcare, research applicable to TGD and non-TGD people, and research helping TGD communities. Barriers were: being research/healthcare averse, not identifying as TGD, overlooking questioning individuals, research coming from a 'cisgender lens", distrust of how the research will be used, research not being accessible to TGD people, and research being exploitative.ConclusionThough similarities emerged between the perspectives of TGD people and research citing perspectives of other underserved populations, there are barriers and facilitators to research which are unique to TGD populations. It is important for TGD people to be involved as collaborators in all aspects of research that concerns them.

Dataset Information

Involving patients in clinical research: the Telescot Patient Panel.

Background

Objectives

Method of patient involvement

Results

Discussion

Implication for research practice

Conclusions

Publications

Involving patients in clinical research: the Telescot Patient Panel.

Similar Datasets

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