Co producing research Benefts and challenges of working with end users

1. Co producing researchBenefts and challenges of working with end users Association of Directors of Public Health Director of Public Health, Hertfordshire County Council Jim.mcmanus@hertfordshire.gov.uk Prof Jim McManus, Vice President

2. Who are end users? • Local Govt Family • Patients • Vol Sector Family • NHS • Police • Politicians • Austerity biting all of us • Different audiences, different methods of reaching • Different dissemination • Impact means something different for each one

3. Challenges of collaborating with users: Uni of Herts engagement work • Multiple methods , social science and psychology approaches to prevention research • Behaviour Change professorship • User engagement group on health and care research • Includes end users and multiple stakeholders • Masterclasses programme at translation shaped by end users

4. Benefits of Engaging End Users with Researchers and Policy Makers 1 • Mental Health • SEND • Sexual Health • LGBTQ

5. Benefits 2 – Healthy Streets Research • Planning • Environment • Transport • Finance • Politician • Public Health • Each stakeholder may have different concerns • And in a Two/Three Tier local government area (a “shire county” even more complex)

6. Challenges – two examples • Adults with Complex Needs Evaluation • Did not go well • Drug Testing on Arrest Evaluation • Went very well

7. LA Perspectives -Strategic Challenges for us – how does your research help us? • Delivering core public health must dos for less • Changing landscape of STPs/ICS (insert this week’s acronym….) • Growing demand and need • The challenges of preventing cost and adverse outcome (Falls going up in some areas) • Levering whole system redesign and prevention using everyone’s resources to save money and improve outcomes • Doing stuff which works • Integration • Massive and confusing literature on implementing research

8. LA Challenges - The 3 or 4E’s Duty or Value for Money Duty • Economy-value for money and delivering the required service on budget, on time and within other resource constraints • Efficiency-getting an acceptable return on the money and resources invested in a service. • Effectiveness- extent to which the organisation delivers what it is intended to deliver. • Equity – not always in there even with legal frameworks

9. The reality and the “knowing” and “interpretive” worlds of end users • The legacy (good and bad) of New Public Management...measure everything, quantify • Money, existing policy and law, influence • The desire to do the right thing or the desire to please political masters. Why are they in the job? • Who’s got a view and how to I balance them? • There’s no money • What is the space for the possible when you take all this into account

10. A nice challenge to have…? • £££ for prevention across County Council Services • Where’s the evidence • How do we build the models for change • How we do evaluate this? • Is evaluation and research seen as value for money

11. The Epistemology of the Policy ProcessWhat they teach you on an MPA and why it’s a pile of….. Source http://www.thisnation.com/textbook/processes-policyprocess.html

12. The Policy ProcessWhat usually tends to happen – the art of influence 1001 issues and influencers, many competing Policy Proposal refinery Repeat loop eternally Partial Implementation or Effectiveness Refinement Compromise Not everyone happy

13. More like a dance than art or science • Requires instinct and “feel” for where you are in the dance and why you’re doing it • Requires good evidence and knowing when to use it • Requires relationship “heart speaks to heart” • Requires emotional engagement • Partnership with the other dancer(s) • Adapting steps to where you are

14. Περιχώρησις - Research, Policy and Gregory Nazianzen • Idea of περιχώρησις perikhōrēsis • Dancing round. Mutual Intimacy. • Interprenetration of understanding • Dynamic hermeneutic unity but not identity • Psychology, Emotion, Mutuality • Perikhoresis as a model for research into policy

15. The Moves to clarify added value of bringing both together • Client – who, what do they want? • Clarify – what is the dance? • Create – work up the doable • Change - what is to be done • Confirm – the what and the doing • Continue – keep doing it • Close – thanks for the dance, happy? Read one review of this here http://www.sweeneycomms.com/The-Seven-Cs-of-Consulting-g.asp

16. Mood On Dialysis: Ethnically Appropriate Screening Tools (MODEST): RfPB [PB-PG-1112-29078] • South Asians are the largest ethnic minority group receiving care for kidney disease in the UK (14% of service users) • Significantly under-represented in research on all stages of End-Stage Kidney Disease pathway (Wilkinson et al, 2019) • First study culturally tailoring screening and diagnosis for wide range of South Asian haemodialysis (HD) patients • 4 languages (Bengali, Gujarati, Punjabi, Urdu) • Robust translation process • Access to research (e.g. self-complete 2 formats, aid of bilingual researcher): • Patient Health Questionnaire 9 (PHQ-9) • Beck Depression Inventory- II (BDI-II) • Centre for Epidemiological Studies Depression Scale Revised (CESD-R) • Whooley Questions • Clinical Interview Schedule Revised (CIS-R) Slides from Dr Shivani Sharma, MBPsS, PGCert, FHEA, CPsychol University of Hertfordshire 

17. Mood On Dialysis: Ethnically Appropriate Screening Tools (MODEST) • 249 South Asian HD patients screened • 50 completed CIS-R • All scales reliably measured construct of depression • Problems with use of total scores to categorise symptoms (i.e. mild, moderate, severe) • Sub-optimal diagnostic accuracy, missing up to 20% of cases despite investment in cultural tailoring • *linguistic equivalence drove combined group analyses across languages

18. Mood On Dialysis: Ethnically Appropriate Screening Tools (MODEST) • How do we refine screening practices as a first line of case identification? • Useful snapshot of profile of experience • Use of diagnostic schemes that are ethnocentric? • Is it better to trigger care pathways based on symptom meaning and impact over diagnostic labelling? • Upskill research community in ethnic tailoring of research design • Impress on funders and commissioners the financial implication of properly answering these questions

19. Communication - Writing style as an example Academic Local Govt Active voice Summaries Recommendations Costings Policy options Impact measurements Feasibility risk • Heavily referenced • Third person • Passive voice • Tentative conclusions

20. Thank you • Jim.mcmanus@hertfordshire.gov.uk