Involving patients in clinical research: the Telescot Patient Panel

Health Expect. 2016 Jun;19(3):691-701. doi: 10.1111/hex.12132. Epub 2013 Sep 30.

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.

Keywords: clinical trials; methodologies; patient involvement; primary care; stroke; telehealth.

MeSH terms

  • Attitude to Health*
  • Biomedical Research / methods*
  • Blood Pressure Monitoring, Ambulatory*
  • Cooperative Behavior
  • Humans
  • Ischemic Attack, Transient
  • Patient Participation*
  • Patients / psychology
  • Professional-Patient Relations*
  • Research Personnel / psychology
  • Scotland
  • Telemedicine*