Resounding South West patient support for health research

Published: 14 March 2016

Taking part in health research comes highly recommended by patients in the South West who felt valued and well looked after as study participants.

The findings of the second annual Patient Experience Questionnaire (PEQ) survey carried out by the National Institute for Health Research (NIHR) Clinical Research Network: South West Peninsula found that patients taking part in studies viewed their experience very positively.

The main aim of the survey is to understand the experience of patients involved in clinical research studies and to identify where the experience, the way studies are conducted or access to research could be improved.

These findings inform strategies developed by the Clinical Research Network and partner healthcare organisations to improve the delivery of health research in the region and work collaboratively to overcome any barriers to participation.

Key findings of the Patient Experience Questionnaire 2016:

  • 94% thought research should be a ‘normal’ part of healthcare
  • 92% felt valued as a research participant
  • 91% said they would recommend research participation to other patients
  • 91% would feel confident to ask about research in the future
  • 68% said they learned more about their health condition as a consequence of their research participation
  • 57% were not surprised to be asked about research before recruitment to a study.

Professor Anthony Woolf, Clinical Director of the NIHR Clinical Research Network: South West Peninsula, said: “The resounding support for health research and positive feedback from patients who have participated in studies is heartening.

“It was encouraging to see so many patients saying how much they felt valued as participants, staff supporting patients in research studies were highly regarded and patients said they would recommend taking part in health research studies to others.

“Benefits from participation included patients learnt more about their own condition and felt reassured with having follow-up assessments to monitor their progress.”

Professor Woolf added: “It is evident from the survey feedback that the time, easy to understand information and support provided by the research staff conducting the studies is valued by the participants.

“A finding we would like to explore further is the 92% of survey respondents who said they would like to know the results of the studies. This is something the Health Research Authority advocates to foster ongoing engagement with the research agenda by patients and the public.”

Patients from the following research active healthcare organisations shared their experience in this survey:

Somerset: Taunton and Somerset NHS Foundation Trust, Yeovil District Hospital NHS Foundation Trust, Somerset Partnership NHS Foundation Trust and patients from 10 GP practices within the Somerset Clinical Commissioning Group area returned PEQ questionnaires.

Devon – Royal Devon & Exeter NHS Foundation Trust, Northern Devon Healthcare NHS Trust, Devon Partnership NHS Trust, Plymouth Hospitals NHS Trust; Livewell SouthWest (formerly known as Plymouth Community Healthcare) and patients from GP practices in the New Devon Clinical Commissioning Group and South Devon & Torbay Clinical Commissioning Group areas returned PEQ questionnaires.

Cornwall & Isles of Scilly – Royal Cornwall Hospitals NHS Trust, Cornwall Partnership NHS Foundation Trust and patients from GP practices in the Kernow Clinical Commissioning Group area returned PEQ questionnaires.

The Patient Experience Questionnaire was divided into three distinct parts:

  • Coming to the appointment
  • About the study
  • About your research experience.

It was distributed to all research study participants attending a research clinic appointment during November 2015. Most of these appointments (82%) were in an outpatient clinic, 14% on a hospital ward and 6% in GP practices.

Of the 1121 survey respondents, 54% were aged between 65-80+ years; 30% aged between 45 and 64; 5% aged between 25-44 and 2% aged between 17 and 24 with 1% aged 16 years or under. The highest number of respondents were participants enrolled on cancer research studies, followed by cardiovascular and diabetes patients.

One patient who took part in research at Torbay and South Devon NHS Foundation Trust said: “It empowered me to accept better treatment that has changed my life and that the study would enable me to go forward and embrace it and accept it and that working towards this was to my benefit.”

Another commented: “Everything to do with the treatment and the research was perfect and I was constantly informed about the treatment I have been receiving.”