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Resounding South West patient support for health research

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.

Plymouth Hospitals NHS Trust received much complimentary feedback and was second highest for response rate to the survey with 81% of patients asked returning their surveys.

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.

Comments from patients at our Trust included:
The warmth, care, consideration and enthusiasm of the staff involved and being encouraged to feel part of the study team. Appreciated sensitivity towards my needs and difficulties.”
“Being part of something which can only be beneficial to us and others. Plus meeting a remarkable caring team.”
“As a wife I was able to understand more about my husband’s stroke and the way it has changed him.”
“The level of care in comparison to a standard treatment plan has been amazing.”
“Being closely monitored was a good experience and helped me to relieve the worry connected to these conditions.”
“Feeling safe and cared for at all times.”

Lisa Vickers, Research and Development Manager said, “Research has become part of the core business for Plymouth Hospitals NHS Trust. We continue to expand our research portfolio for NIHR and I am delighted that this survey reflects the positive attitude that our patients have towards our efforts.”

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.”

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.


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