Hints and Tips for Research for Patient Benefit Application Dr Sue - PowerPoint PPT Presentation

Hints and Tips for Research for Patient Benefit Application Dr Sue Hinder Lay member Research for Patient Benefit Programme Presented at the NIHR RDS NW Preparing an application for the Research for Patient Benefit Programme Workshop – 06/11/2009

First…..  GET A STATI STI CI AN ! (For an RCT or pilot RCT)

Building a ‘dream team’  Service users and carers  NHS organisations who will implement  Clinicians – including frontline staff  Academics – social scientist, research methodologist.  Statistician  Health economist

Actually, start here…. Applicat i t ions t h t hat t em erge from int e t eract i t ion w it h pat at ient s an and public ar are explicit ly w el elcom ed ed in the Guidance. Working with a service user group on problems arising out of their day to day engagement with NHS services can often help to keep the focus on the applied nature of the project and on the trajectory into patient benefit. (RfPB Guidance notes)

Patient and Public ‘Intelligence’ at all stages  Going through your project like ‘Blackpool’ in a stick of rock  Experts in their conditions and their communities  Tacit knowledge  Relevance  Analysis and interpretation of findings  Spreading the knowledge

Understanding of PPI  Involvement in the DESIGN  NOT getting service users and carer’s views in a study

Why PPI?  Assurance that research is relevant  Democratic accountability  Making research value for money  Information from experts in the condition  Service user and carer ‘perspective’  Needed for IRAS ethics application

PPI and the Research Question  Relevance – important v critical issues  Easier implementation- importance of user, carer and staff views  Small changes can have big effects – Complexity Theory & the coffee break  The question you ask determines the answer

Reminder….  GET A STATI STI CI AN !

Clarity  Make sure your proposal is clearly written  You are writing for people outside your profession  Committee members have up to 20 proposals to review plus the 3-7 peer reviews for each proposal  Lack of clarity usually means not thought through

Scrutiny stage  In scope for RfPB ?  Patient Benefit in approx 5 years  Probably not diagnostics  Not ‘blue skies’  More suitable for another programme. HTA ?  Pilots with a view to the main study OK  Methods – fit for peer review?  Is it being done elsewhere?

Peer reviewers  Lay reviewer with experience of condition  Lay reviewer with general view  Researcher in the same field  Researcher in similar field  Widely differing views

Committee  Clinical academics  Social scientists  2/3 lay members  Pre-reading  Lead Assessors – reminder summaries  Discussion -different opinions, even statisticians can disagree !

Common problems  Forgot the statistician !  Lack of a ‘dream team’  Not referencing/discussing important research  Too complex – too many assumptions  Research methods  Project management – is it realistic?

Costings  £249,999 – suspicious !  Looks like the project may have been developed to fit the budget

Literature Reviews  Acceptable as part of the proposal  Updating of literature review  What if the research question or research design changes as a result of the literature review?

How to do Patient and Public Involvement http://www.rds- nw.nihr.ac.uk/PI/how_to_guide.php  Takes time and money

Develop a user group  Multiple views  Developing knowledge of research methods  Developing working relationships  Enthusiasts  Involvement Portfolio

And…  Self-help groups  Individual service users from practice

Which users and carers?  Very important not to ‘tick the box’  People with direct experience of the condition  Carers with direct experience of the condition  Make no assumptions  Leaders of community groups – do they really know?

Patient and Public Involvement section  Describe who has been involved and how  Has the proposal developed from issues raised by service users or problems in practice  Describe how they will be involved throughout the project  Aim for 3 service users on steering group or advisory group  Payment offered

Patient and Public Involvement section  Lay members would like this moved to the front of the form to ‘nudge’ researchers towards considering PPI at the beginning.

Focus -start with the end in mind…. Will the results of this research make life easier for the service user or carer?

Questions

Group work  The Diabetes Patient’s Forum have called for training for their partners or carers. They believe this will help to improve their self- management and lead to less hospital visits and ambulance call outs. They also believe it will improve their quality of life by helping them feel more secure in the knowledge that their partner or carer can cope if they are unwell.

Group work  30 mins discussion  Develop the research proposal  Brief notes in the RfPB template  Feedback  Discussion

Thank you…. Dr Sue Hinder RaFT Research and Consulting Lower Hall Downham Clitheroe Lancashire 01200 440912 susan.hinder@virgin,net