Clinical Research Network Wessex CRN Wessex Patient Research Experience Survey 2017/18 Report Authors names & job titles Main issues/executive Summary Kim Appleby, communications lead, CRN Wessex and Graham Halls, business intelligence manager, CRN Wessex The report sets out the results of the NIHR Clinical Research Network Wessex (NIHR CRN Wessex) patient research experience survey 2017/18. Key achievements: 91% of Wessex research participants surveyed would be happy to take part in another research study 94% of Wessex research participants surveyed had a good experience of taking part in research 1 Purpose/Context/Introduction The purpose of this report is to inform the partnership group of the findings of the NIHR CRN Wessex PRES 2017/18. The CRN Coordinating Centre (CC) requires that each Local Clinical Research Network (LCRN) carry out a PRES annually and provide detail in their annual report. The patient experience is a key element in the business of delivering research. Understanding the patient research experience allows for the promotion of best practice, the identification of recruitment and retention problems and the continuous improvement of the research processes. The NIHR CRN Wessex PRES 2017/18 was designed in collaboration with representatives from the Wessex Public Involvement Network (PIN) and participating partner organisations (see appendix 1). The survey included requisite questions from the CRN CC, as well as bespoke questions about public involvement opportunities and the demographics of participants. With the support of research nurses in partner organisations, the PRES was distributed across eight trusts in Wessex during October and November 2017. Patients participating in NIHR CRN portfolio studies and attending appointments during this time period were given the opportunity to complete a paper survey about their experience. It did not matter which stage of their research experience they were at when completing the survey. A total of 262 responses were received. A summary of these responses can be found below.
2 Key issues Participant demographics The following charts show the demographic information of the 262 respondents. 53% of respondents were aged 18 to 65, 45% were aged 66 and over and 2% did not share their age. Chart 1: Age of respondents 47% of respondents were male, 51% were female and 2% did not specify. Chart 2: Gender of respondents 74% of respondents reported that they were White British. 15% did not specify their ethnicity.
Chart 3: Respondents by nationality Eight trusts across Wessex took part in the survey. The number of responses per trust is shown in the graph below. Chart 4: Respondents by trust
CRN Coordinating Centre requisite questions The CRN CC asked that each LCRN survey include three requisite questions, the responses from which are included below. Each LCRN was asked to use these questions so that national analysis would be possible. Participant responses to the requisite questions are included below. An average of 90% of participants surveyed said they had a good experience of taking part in research. On average, 88% of those survey said that they would be happy to take part in another study. I had a good experience of taking part in the research study Chart 5: Patient experience by trust I would be happy to take part in another research study Chart 6: Percentage of respondents happy to take part in another study, by trust
Qualitative feedback was gathered from a free text box. Respondent answers have been grouped in the word cloud below. Chart 7: Qualitative feedback from respondents about their experience of research
Sample comments from the 2017/18 PRES General Totally in support of any research for improvement. Can't say the experience was good, it was certainly interesting. Have had very positive experience so far - would do it again. Have seen vast improvements Would like to think it would help research other people. Was allocated basic treatment - same as not on trial Having received excellent treatment during my illness, I'm happy to take part in studies to possibly help others. Staff I believe it has given the amazing good health & happiness. Fantastic care & treatment. Very very lucky to be included Happy to help with anything that can contribute to improving care. Research staff very friendly and helpful I have had a worthwhile experience & may, hopefully help others. Wonderful staff and I was always kept informed I felt very looked after It is important to take part in research for future generations. Every practitioner was encouraging, positive and kind Travel/access/venue Time and waiting Excellent medical team, caring & supportive. All questions answered. Prompt team response to my medical problems Professional team. Only distance travelling is a problem for me Very busy with grandchildren and don't like parking fees Unfortunately due to work commitments I have less time now to be involved. If it helps one person it's worth doing. It was not inconvenient, all appts were on time Side effects and clinical procedure I have not had a good experience, felt very poorly at times. Maybe if I wasn't so poorly with it I would. I did not like having my blood pressure taken I wonder if examination every 3 weeks and x-ray scans every 9 weeks is maybe a little too soon. Research nurses were very efficient Some problems when taking blood tests (not always) Information/ communication Informed all the way through treatment. Great staff, helpful, reassuring. Seen regularly and kept informed of my condition I am hearing impaired. I found it difficult to separate the research subject from the information, due to my age! The research nurses were very helpful and answered all my questions fully
Public involvement questions from the Wessex PIN Respondents were asked if they had heard of public involvement. A mean of 34% had. Have you heard of public involvement? Chart 8: Awareness of public involvement The respondents were asked if they had ever been offered the opportunity to be involved. The chart below shows their responses per organisation. Have you ever been offered the opportunity to be involved in PPI? Chart 9: Opportunities to get involved
The 41 participants who responded yes and accepted were invited to rate their experience of patient and public involvement. 12% rated their involvement as a very good experience. 2.3% reported having a very poor experience. If you have taken part in public involvement, please rate this experience Chart 10: Experience of involvement Respondents were asked if they would be willing to share their experiences to support future research. Their responses are shown in the chart below. 73% said yes, 21% were not sure and just over 4% said no. Respondents had the opportunity to leave their contact details if they wanted to be contacted about involvement opportunities. If not, they could remain anonymous. Patient and public involvement leads at partner organisations were given the opportunity to follow up with those who left their details.
Would you be willing to share your experience as a patient, family member, carer, friend or member of the public? Chart 11: Sharing experiences to support future research 3 Next Steps / Way Forward / Implications / Impact The 2017/18 PRES shows that most research participants who responded had a positive experience of being involved in research. However, it is important to note that the sample is taken from people already committed to participating in studies, and does not capture the experiences of those who may have pulled out of studies due to poor experience. CRN Wessex will be sharing this feedback and the raw data with participating partner organisations. CRN Wessex plans to deliver the next PRES in October 2018 include primary and secondary care. CRN Coordinating Centre requirements for the 2018/19 PRES are shown in Appendix 2.
4 Recommendations Whilst the 2017/18 PRES provides a snapshot of a small number of patients in Wessex, it does show a very positive attitude to research and research involvement. a) Partner organisations are asked to review the results of the survey and continue to work with CRN Wessex to ensure that patients in Wessex continue to have a positive experience of research. b) Kim Appleby, CRN Wessex PPI lead, will be inviting feedback and input from partner organisations and their patient and public leads to design and deliver the next PRES in October 2018. CRN Wessex would like to thank its partner organisations for their excellent work in delivering the 2017/18 survey. Most importantly, it would like to thank the patients and public who took the time to complete the survey and provide valuable feedback on their experience.
Appendix 1 Participating organisations Dorset County Hospital NHS Foundation Trust (DCHFT) Dorset Healthcare University NHS Foundation Trust (DHUFT) Hampshire Hospitals NHS Foundation Trust (HHFT) Isle of Wight NHS Trust (IOW) Portsmouth Hospitals NHS Trust (PHT) Southern Health NHS Foundation Trust (SHFT) The Royal Bournemouth and Christchurch NHS Foundation Trust (RBCH) University Hospital Southampton NHS Foundation Trust (UHS) Organisations in the Wessex Public Involvement Network NIHR Research Design Service South Central (RDS SC) The Wessex Institute (WI) (comprising the NIHR Evaluation, Trials and Studies Coordinating Centre, Southampton Health Technology Assessments Centre, the NIHR Dissemination Centre and INVOLVE) NIHR Collaboration for Leadership in Applied Health Research and Care (CLAHRC) Wessex NIHR Clinical Research Network (CRN) Wessex University Hospitals Southampton NHS Foundation Trust, Southampton NIHR Clinical Research Facility (CRF) and Southampton Biomedical Research Centre (BRC) Southampton Clinical Trials Unit (CTU) NIHR School for Primary Care Research (SPCR) University of Southampton
Appendix 2 NIHR Clinical Research Network required Patient Research Experience Questions for 2018/19 surveys Required Questions: These questions must be included in the 2018/19 PRES, as written, with responses returned to NIHR Clinical Research Network by Friday March 1st 2019. It is required that LCRNs group these 3 questions in the same order, within a distinct section of your survey, in addition to the questions you are asking locally. 1) I was given all the information I needed in relation to the study. Strongly disagree 1 2 3 4 5 Strongly agree 2) I had a good experience of taking part in the research study. Strongly disagree 1 2 3 4 5 Strongly agree 3) Use this space to tell us more about your answers to the above questions (Freetext).. Please note: The following statement or similar must be included in your survey introduction so that people are aware of how the information they give us will be used: The information you give us will be used to understand: 1) what works best for patients in the way we do research in the NHS 2) where we can make helpful changes in the way we do things if needed. It may also be used for example in: 1) publicity about the value of research to patients 2) illustrating reports about research).