Developing Consumer Involvement in Primary Care Research

1. Nottingham Primary Care Research Partnership Developing Consumer Involvement in Primary Care Research - the suck it and see approach! Rose Clacy – Consumer Rachel Nickeas – Service User and Evaluator Jane Stewart - Research Fellow/Lead for Public Involvement jane.stewart@broxtowehucknall-pct.nhs.uk

2. Nottingham Primary Care Research Partnership(NPCRP) • Formed in April 2002 • Partnership of research active GPs previously receiving research funding • Funded Dept. of Health NHS Research & Development support funding • Hosted by Broxtowe and Hucknall Primary Care Trust • Close links with University of Nottingham

3. 5 Research Programmes • Each programme • Is led by University based academic • Has an NHS employed research fellow • Programme titles • Ageing and Rehabilitation • Clinical Genetics in Primary Care • Injury Prevention • Medicines Management in Primary Care • Primary Care Management of Coronary Heart Disease/Diabetes

4. Making a start • INVOLVE • NHS Research & Development Forum • Health Technology Assessment 2004 • School of Community Health And Related Research (Sheffield)

5. Pearls of Wisdom Start small - find people you think would be ‘good at research’ (Derek Stewart, Chair Gedling PCT, Consumer Liaison Group National Cancer Research Network) Document mistakes and lessons learnt (Carol Lupton DH Policy Research Programme Commissioner) Start small - Have specific roles and responsibilities, keep people engaged and involved (John Sitzia, R&D manager Worthing and Southlands NHS Trust) Start small – Be honest with consumers that you are learning about consumer involvement and want to learn together with them (Phillipa Yeales, INVOLVE) Start learning about the processes of consumer involvement using an ethos of reflexive research (HTA) Involve consumers to develop and adopt appropriate working practices (HTA)

6. Getting on with it! Involve consumers to develop and adopt appropriate working practices (HTA) • Support from NPCRP • Enthusiastic support from the top - money and time • Steering Group: • Professionals • ‘Making Waves’ – a Nottingham based service user group with experience of research • Worked together developing plans for how we would: • Recruit consumers • Pay consumers for their time and reimburse expenses • Evaluate what we were doing – submitted a joint bid to Trent RDSU for a research capacity development award

7. Beginning involvement… Start small - find people you think would be ‘good at research’ • Started small • Training for consumers • Training for professionals • Identifying and matching interests of consumer to research projects

8. My experience of being a Consumer Involved in NHS Research – The story so far… How and why did I become involved? • Jane knew me • I had flexibility of time, the funding for my previous job had ended • I want to help provide a good NHS service • I am interested in research

9. What experience did I have to offer? • Personal experience • As a patient who uses NHS services • As a parent • Elderly and disabled parents/relatives/neighbours • Professional experience • Social Services and Homelessness Charity • Using Equal Opportunities policy • Research regarding parent’s support needs

10. What happened next? • Initial meeting attended • The meeting was organised, informative and friendly • Commitment made to continue • Training events organised on research methods, meetings, what to expect • Late January conference: The Realities of the Service User and Carer Involvement in Research (NHS Research and Development Forum) • Met researchers from different projects • Got to know other consumers involved

11. The Research Projects that I have been involved in…

12. Randomised controlled trial of thermostatic mixer valves in families with young children in social housing • Developed invitation letter and information leaflet. • Looked at letter and leaflet in terms of: • who would receive the letter • what their first impressions would be • VISUAL APPEARANCE • COLOURS • PICTURES • TONE OF LETTER- INVITING, NOT COMPULSORY • WORDS USED, LENGTH OF SENTENCES, CLARITY

13. Questions: • Will people understand written information? • Does it make them feel their views are worthwhile? • Will they participate in the research End result - Much improved, easier to read. • Flesch score ( reading ease) from 76.5to93.3 • Reading age from 11-12yrs to 8-9 yrs Positive feedback from letter and information leaflet

14. ‘Community Matron study’ • In from the beginning • Part of the team • Named applicant for ethics approval • Preparation of ethics application • Information sheet/introductory letter

15. Positive aspects Benefit from consumer’s experience Good for the service – positive for the consumer Feel you have some influence Get to know about research Well organised What could be improved? More time to run the scheme More impetus at the beginning – training and meeting with other consumers Everything takes so long! What has gone well?

16. Evaluation • How will we know if: • Involving consumers has made a difference • We have done it well • Designed evaluation together • Developmental evaluation approach • Judge ourselves against ‘Indicators of successful consumer involvement’ (Sheffield) • Work being carried out by service user Learn about the processes of consumer involvement using an ethos of reflexive research Document mistakes and lessons learnt

17. Evaluation methods • Completion of feedback forms after: • Training sessions • Meetings – consumers and professionals • Evaluator present at some meetings • Are consumers able to contribute? • Do researchers respond appropriately? • Are consumers ideas taken on board? • Telephone interviews with • Consumers • Professionals

18. Benefits of this approach • Regular feedback of findings • Identify problems early and change the way we are doing things • Getting going taking too long • Issues about some training identified from phone calls not detailed in written feedback • Traditional training not meeting needs of whole group • Positive feedback builds confidence – for the researchers

19. Challenges • Concerns/Scepticism • Service user organisation • Researchers • Consumers • Payment of consumers • Doesn’t fit with existing organisational policies and processes • Dept of Health guidelines Jan 2006 - ? Inhibit consumer involvement • Sustainability • new Dept of Health research funding

20. Successes • Dept of Health feedback to 2005 R&D annual report • Developed successful collaboration between professionals and service user group • Recruited enthusiastic group of consumers/established good relationship • Consumers now involved in all research programmes at different levels.

21. Thank you for listening! Any questions?

22. Questions • What is the best way to develop peoples’ understanding of research to help them contribute to the research? • How can we demonstrate to people that their ideas and contributions really are worthwhile and make a difference? • How can we sustain our existence?

23. Dear Tenant • Do you have a child under 5 years old? Every parent wants to keep their child safe from accidents. Did you know that the water from most people’s hot water taps is hot enough to scald a young child? We are offering to fit a free safety valve to your bath to help stop your child getting a scald. We are writing to all GHA tenants living in [ specify area] because we want to reduce the number of young children who suffer scalds. • Fitting your free safety valve is part of a research project we are undertaking. If you take part you will need to: • fill in two questionnaires about bath time safety. • have a free safety valve fitted to your bath in either Spring 2006 or Spring 2007 • let project staff measure the temperature of the water from your bath hot water tap just once. • Every time you fill in a questionnaire we will give you a £2 Boots voucher. When we measure the water temperature will give you another Boots voucher – this time for £5. • To take part, you need to have at least one child under 5 years old. If you do, and you are interested in taking part in this safety project and receiving your free safety valve, please fill in the form. Then post it back to us in the FREEPOST envelope. (It doesn’t need a stamp.) When we receive your reply, we will telephone you to tell you more about the project. So please remember to fill in your telephone number.  • Thank you for your time

24. Dear Parent • Did you know that over 2000 children a year are scalded by bath water in the UK? • Don’t let your child be one of them • Glasgow Housing Association can fit an anti-scald valve to your bath tap FREE OF CHARGE • All we ask in return is that you • take part in our short survey about bath time safety • tell us what you think about your new anti-scald valve • let us visit you once to check your hot water temperature • We will thank you for your time by giving you • a choice of a FREE non-slip bath mat or first aid kit at the start of the study • high street vouchers or a mystery gift to the value of £15 during the project • To find out more just fill in the form. Please make sure you give us your phone number so we can call to give you more details. Send the form back to us in the FREEPOST envelope – you don’t need a stamp. •  Thank you for your time. • Flesch score from 76.5to93.3 Reading age from 11-12 to 8-9 years

25. Useful documents • Steel, R. (2004) Involving the public in NHS, public health, and social care research: Briefing notes for researchers 2nd edition Involve (2004) (Involve website) • Oliver, S et al. Involving consumers in research and development agenda setting for the NHS: developing an evidence based approach Health Technol Assess 2004; 8 (15) • Boote J, Telford R & Cooper C. Principles and indicators of successful consumer involvement in NHS research: results of a Delphi study and subgroup analysis. Health Policy, 2005 • Baxter, L et al.(2001) Small Voices, Big Noises: Lay involvement in Health Research: Lessons Learnt from other fields. Exeter, Folk US (School of Psychology, University of Exeter/Consumers in NHS Research) (Involve website) • Lockey, R et al. (2004) Training for Service User involvement in health and social care research: a study of training provision and participants experiences (The TRUE Project) Worthing: Worthing and Southlands NHS Trust (Involve website)

26. And more …. • Department of Health (2004) Patient and Public Involvement in Health: The evidence for Policy Implementation www.dh.gov.uk • Involve (2005) A guide to paying members of the public who are actively involved in research: For researchers and research commissioners (Involve website) • Department of Health (2006) Reward and Recognition The principles and practice of service user payment and reimbursement in health and social care: A guide for service providers, service users and carers www.dh.gov.uk

27. Useful links • Involve www.invo.org.uk • Social Care Institute for Excellence www.scie.org.uk • Volunteering England www.volunteering.org.uk • Service User Research Group England www.mhrn.info/dnn