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NiHR public contributors' feedback report April 2019

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This slide-set summarises the results of the public contributors survey that the NIHR conducted in December and January 2019.

Published in: Health & Medicine
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NiHR public contributors' feedback report April 2019

  1. 1. NIHR (2019) NIHR public contributors’ feedback survey: Results from a national survey of people’s experience of being involved in NIHR’s work. April 2019 Simon Denegri, NIHR National Director for Patients, Carers and the Public
  2. 2. What’s it like being involved in NIHR research? National survey of people’s experiences Key themes: • We have a strong, supportive and highly motivated public involvement community • Vast majority feel they make a difference and that their contribution is valued • People form their view about research and the NIHR based upon their ‘local’ relationship • They are fulfilling a range of roles for us and other funders/organisations • Diversity remains a significant issue for us – age, ethnicity etc. • There is considerable variety and inconsistency in practice ‘Sometimes, but…,’ ‘Yes, but….’ • Communications, feedback and acknowledgement areas for clear improvement
  3. 3. What’s it like being involved in NIHR research? National survey of people’s experiences Objectives: • To find out more about our public involvement community, their experience of being involved in NIHR research • To find out more about whether they felt valued by the NIHR and had the opportunity to make a difference. • Also, what does ‘difference’ look like to NIHR public contributors and use this as the basis of developing a PPI impact statement for the NIHR. • To help establish benchmarks against which future progress in advancing and promoting public involvement can be measured in the future • To set a precedent for doing similar work in future years as part of an overall strategy of improving feedback and communications.
  4. 4. What’s it like being involved in NIHR research? National survey of people’s experiences Methodology • Survey developed with impact working group including public contributors • 19 survey questions tick box and open ended comments • 3 sections about: the respondent, their involvement, and experience of working with NIHR • Questions piloted by public members (Oct – Nov 2018) • Survey open from 10 December 2018 – 14 January 2019 • Good response = 809 responses with a 72% completion rate – largest NIHR survey of public contributors on involvement experience • Survey only available online which may have limited its accessibility and appeal to some groups • Provides a national picture but does not break this down into regions or different parts of the NIHR
  5. 5. Our community
  6. 6. 35% 58% 1% 6% Respondents - Gender (N=809) Male (35%) Female (58%) Non-binary (1%) Not stated (6%) Key point: Underrepresentation of men Women (58%) Men (35%)
  7. 7. 4% 20% 24% 18% 14% 2% 18% Respondents - Breakdown by Age (N=809) 80 + (4%) 70-79 yrs (20%) 60-69 yrs (24%) 50-59 yrs (18%) 26-49 yrs (14%) 25 years and under (2%) Not stated (18%) Key point: under- representation of younger age groups Less than 25 years (2%) 26 – 49 years (14%)
  8. 8. 77% 2% 5% 3% 2% 3% 8% Respondents - Ethnic origin (N=809) White - British (77%) White - Irish (2%) White – Other (5%) Asian/Asian British /Asian Other (3%) Black or Black British (2%) Mixed Heritage/ Other (3%) Not stated (8%) Key point: Underrepresentation of minority ethnic groups Asian ethic groups 3% (ONS fig. 7.2%) Black ethnic groups 2% (ONS fig. 3.3%)
  9. 9. 44% 30% 8% 7% 9% 2% Respondents - Main perspective of contributors (N=809) a patient / service user (44%) a member of the public (30%) a carer (8%) a service user researcher (7%) other (9%) not stated (2%) Key points: • Underrepresentation of carers (8% ) • Most (74%) were either patients / service users or members of the public with lived experience
  10. 10. 12% 47% 19% 7% 2% 13% Involvement - Length of time involved in NIHR's work (N=809) Under a year (12%) 1-5 years (47%) 6-10 years (19%) 11 years+ (7%) Don't know (2%) Not stated (13%) Key point: NIHR continue to involve new public contributors • in past 12 months (12%) • between 1-5 years (47%)
  11. 11. What role do public contributors play?
  12. 12. 48% 15% 20% 52% 9% 41% 7% 13% 6% 27% Experience - Worked with other organisations (N=575) Key points: • Our public contributors are involved in many other organisations and have an important role in the future in building partnerships and collaborations • Social care and industry are key areas where we need to support the development of involvement
  13. 13. 22% 33% 43% 11% 43% 22% 22% 17% 23% 32% 16% 15% Involvement - Extent and range of (multiple) activities (N=700) Series1 Key Points: • People are playing a number of roles within their part of the NIHR • But based on comments these may not all be accurate descriptions of their activities. For example: when people ticked the ‘co-applicant’ and/or ‘co-author’ boxes, their comments were generally about involvement in reviewing research applications or final reports. “ these categories need greater definition in accessible language for me to understand and answer fully (maybe with some examples)”[Comment from a respondent]
  14. 14. What is their experience like? ‘Yes, but……’
  15. 15. Is it easy to get involved? ‘Yes’ box (67%) • “Yes once you are ‘in’ it is easy. ..but to start with it’s a bit of a maze’ ‘Sometimes’ box (23%) • “Sometimes researchers have been eager for PPI involvement, others have done it entirely tokenistically - not actually wanting us there” • “I've had to actively seek out involvement opportunity which takes a lot of time and effort, plus there's having to fight your way into involvement even when you've identified an opportunity. Things pretty well-hidden and exclusive.” [Comments from respondents] 67% 6% 23% 4% Q7. Easy to get involved in NIHR's work? (N=692) Yes (67%) No (7%) Sometimes (23%) Don't know (4%)
  16. 16. Most helpful support? Yes but…. For example on payments rated the most helpful support (expenses(24%); time 23%) “This is all a 'Yes' but..... The expenses systems and systems for payment are rarely easy to navigate or just are not set up to pay patients/lay people. The hoops that some institutions have made me jump through have been extreme and then the payment times vary from 'great' to 'that took months'. Then there is willingness to pay a meaningful amount which values both my time at the meetings and my time on all the emails in between the meetings and there is how to charge for a teleconference…...” [Comments from respondent] 24% 23% 18% 7% 6% 14% 8% Qu 10. Most helpful of the support received (N=552) Arrangement for receiving expenses (24%) Payment for time (23%) Training (18%) Support for accessibility (7%) Mentoring (6%) Other support (14%) Don’t Know/ Not stated (8%)
  17. 17. 64% 13% 20% 3% Are you kept up to date about NIHR work you’ve been involved in? (N= 611) YES (64%) NO (13%) SOMETIMES (20%) DON'T KNOW (3%) How would you like to be kept up-to-date? (n=585)
  18. 18. 40% 38% 15% 3% 4% Satisfaction with experience of involvement in NIHR's work (N=605) Very satisfied (41%) Satisfied (38%) Sometimes satisfied (15%) Not satisfied (3%) Don't Know (4%)
  19. 19. Satisfaction with experience of being involved in NIHR research? High overall satisfaction rating with many positives and lots of goodwill on the part of public contributors. However…. • It remains difficult for many people to get through our front door and become part of what we do • Even the best experiences are often couched in a ‘Yes, but…..’ • Feedback and communications is a major area of improvement: – Can we really hold our hand up and say we are a learning based organisation? – How do people know they are making a difference without good feedback? • People’s experiences are based on their ‘local’ relationship (with a PI, research team, institution) – they are not sure about NIHR or how important they are to it? • Persistent questions over authenticity of involvement
  20. 20. Satisfaction with experience of involvement in NIHR’s work - comments “Most satisfied hearing different perspectives that are really valuable and are likely to improve the research project and project outcomes.” “I am satisfied that my input has been valued and when feedback are given to applicants my contribution is considered. I believe my involvement is helping to improve quality of care through new research or modifying existing care approach. I have no major dissatisfaction, however, would like an induction and mentoring at the start.” “The opportunities are interesting and informative and the teams I am involved with are generally extremely supportive and good to work with.” “Sometimes satisfied: the genuine satisfaction that researchers have shown as they come to recognise the capability PPI can provide. Least satisfied: a) mistaking 'informing' for 'involving' b) not giving feedback (most usually when a project such as a grant application has been unsuccessful).” “ Most satisfying - feeling input is being taken into account. .. Least satisfying feeling input is a ‘tick box’ exercise” Not satisfied “Lack of feedback and complicated processes” [comments from respondents]
  21. 21. 55% 22% 19% 4% Feedback Have you received feedback on your contribution? (N=607) Yes (55%) No (22%) Sometimes (19%) Don't know (4%) 49% 32% 13% 6% Have you been asked to give feedback on your experience of involvement (N=608) Yes (49%) No (32%) Sometimes (13%) Don't know (6%)
  22. 22. How can we improve?
  23. 23. Summary suggestions Themes included: “Give me more to do!” • Public contributors want to do more, be offered more and know how to find out about other opportunities for involvement “Encourage use of plain language” • Plain English/jargon guide - make the NIHR’s work and the public contributors’ role all easier to understand “Have a more diverse range of people … to make NIHR’s work much more meaningful and reach out to a wider audience” • Inclusion of different skills and experiences “Openness regarding the choices you make and more about who actually makes them.” • More transparency and openness about NIHR PPI processes
  24. 24. Summary suggestions - feedback “Feedback, feedback, feedback” Suggestions for more consistent: • feedback on public contributors’ individual contributions and the difference they made, if they should do anything different for example in reviewing and what happened as a result of their review • feedback on projects that get funded • feedback on the findings of research they were involved in as well as the impact of PPI in the study • feedback in general re PPI in NIHR and NIHR research what is happening
  25. 25. Summary suggestions - communications “Keep us informed, communication is poor” Suggestions for : • Better, more accessible communication about the work of NIHR in general • NIHR PPI newsletter include information on opportunities for involvement, updates on research projects, links to wider issues • Acknowledgement of public contributors’ involvement in articles and research • Keeping in contact – making public contributors feel valued, acknowledged for their involvement as meaningful rather than tokenistic
  26. 26. Making a difference
  27. 27. Is your contribution valued by the NIHR? • “Yes ‘I feel that it has been appreciated by the teams that I work for, but I haven't had direct contact with NIHR to know what they think.” • “I think it is valued but it is not always clear that it is or why.” • “Sometimes researchers have given the impression that they are involving the public because they have to 'tick the box'.” [Comments from respondents] 65% 1% 15% 19% Qu 8. Is your contribution valued by the NIHR? (N=618) Yes (65%) No (1%) Sometimes (15%) Don't know (19%)
  28. 28. Do you think you are making a difference? “Yes but can only tell when you get feedback which I have mostly but not always had…. Quite often the feedback is that it was very useful but then there is little or no indication after the event of anything happening as a result. … it may just be a task too many but lack of feedback makes it difficult to know whether my involvement is useful” [Comment from a respondent] 69% 3% 15% 13% Qu 11. Do you think your involvement made a difference (N=607) Yes (69%) No (3%) Sometimes (15%) Don't know (13%)
  29. 29. What difference you would like your involvement to make
  30. 30. What difference you would like your involvement to make (N=519) Final outcome: result in tangible changes to the health care system – improved services and better treatments for patients By: • influencing the research itself – inclusion of patient voices - improving the quality and relevance of the research • supporting research participants in clinical trials or studies – better understanding of and access to taking part in research. • working with researchers – acknowledging the benefits of involving patients in their work • producing information about research for the public - providing accessible/ easy to read articles / presentations
  31. 31. This report should be referenced as: NIHR (2019) NIHR Public contributors’ feedback survey: Results from a national survey of people’s experience of being involved in NIHR’s work, …..insert web link Acknowledgements: Simon Denegri and Maryrose Tarpey would like to thank members of the NIHR public involvement impact working group and the many others who helped us pilot the survey and comment on the draft analysis of the findings. Special thanks to Wendy Baird, Jon Cole, Helen Hayes, Rachel Matthews, Una Rennard, Erin Walker, Judith Williamson, and Philippa Yeeles.
  32. 32. Thank you Simon.Denegri@nihr.ac.uk Twitter: @SDenegri Blog: http://simondenegri.com/ April 2019

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