What should a Strategy for Involving Local People in Research look like?

One of the first things that strikes me about many Policies, Strategies and Plans for Engaging and Involving patients, service users, carers and the public is that they sit apart from the purpose of the organisation where they exist. The second feature is that they often just concentrate on the processes of patient and public involvement rather then its purpose to make research better - more relevant and appropriate, more accessible, quicker and easier to understand. The third feature is that they stop at research rather than connecting it to improving health and wellbeing. Fourthly, they lack measures to assess the added value patient and public insight brings.

The following framework is being developed by the NIHR Nottingham Biomedical Research Centre (BRC) as means of setting out the different elements for our Strategy. 

Producing a Strategy - Here are some of the questions we are asking.

What is the ambition? (AIM & PURPOSE) - Involving and engaging patients and the public is the means of achieving the ambitions . Involvement is an enabler, a vehicle that provides unique insight to help deliver high quality research to improve future health.

We are talking to people to help set out how the involvement of patients and the public will contribute to the work of the BRC and local people's lives. These discussions will shape our ambition and help make it happen.

About Our BRC (CONTEXT) BRCs provide a vital link between the health services and local patient need that may be different across the country. The way patients and public are already involved will have a bearing on our direction of travel.

We want to briefly tell the local story and mark our starting point as building on good practice

What is the Strategy? (SCOPE) Involvement, Engagement and Participation

We will set out how these are related and reflected throughout our plans and practice

How is it being developed? (PROCESS) We will ensure that we hold the values of involvement and have a process for engaging and involving patients, public and partners

We will report on how we have consulted and made changes to our thinking and to the report

How does it meet with national and local Policies and Reports? (ALIGNMENT) We need to use these reports for references on the wider picture.

We will do a speedy review of relevant documents to check for areas in commonality and difference to show how involving people fits together with other reports

How are we working together? (COORDINATION) BRCs can play vital role in hosting meetings, encouraging partnership working,

We will explain how we are supporting the development of One NIHR at a local and regional level.

Where are we now and in future? (ANALYSIS) We will carry out a simple Strengths, Weaknesses, Opportunities & Threats (SWOT) activity

We will base our Strategy on a thorough understanding of where and how patients and the public are currently engaged / involved and where we are heading

How will we know we have made a difference? (REVIEW) Capturing the story, counting some numbers and circulating it with others will help us measure the impact 

We will explain how we will test out various ways acknowledging, celebrating and illustrating the ways in which patients, public and partners have changed and improved the BRC

We would welcome feedback so that this is developed in partnership with as many people as possible - please contact derek.stewart@nuh.nhs.uk 

Tweet #publicinvolvement @DerekCStewart

Derek Stewart is the Interim Director for Patient Involvement at Nottingham BRC

    

Being Effective #5 Influencing Research and making friends

Being Effective #5 - Influencing Research (and Making Friends)

Produced by John Reeve and Derek Stewart with further rich contributions from Roger Wilson, Jacqui Gath, Kathy Oliver, John Lancaster, Victoria Nnatuanya - members of the NCRI Consumer Forum - Thank you!

Our main function is often to inform the researcher but we also have a responsibility to influence research now and for the future. This may be about the type of research that is carried out, the range of research, the use of technology, etc.

So, how have many of these cancer patients made their voices heard so powerfully in research policy and practice. Here is the latest Top Ten:  

1. Get to know people - we are human beings first rather than either patient & researchers. It is a relationship.

2. Ask about each other’s life’s away from health and research* 

3. Have a genuine interest in the research that is being done

4. Enquire about the challenges and issues faced in this research

5. Seek out one or two ‘quick wins’ that together could be achieved

6. Focus on where the patient input could add most value 

7. Once accomplished, or when nearly there, begin the bigger task

8. Identify and define the actual problem (e.g. is it to do with practice, systems or policy)

9. Make a plan that you can explain and people understand 

10 Finally, Just Do it! 

And a DON'T: If you’re trying to influence an individual or a room full of people and what you’re doing isn’t working, STOP. Try something different. Repeating our message or saying it louder invariably makes things worse.

* This provoked an email dialogue which touched on examples including the merits of the Playstation, black pudding, musical inabilities, travel, children, holidays and fund raising concerts. (These are clearly the meetings I should have attended)

John Reeve added the following contribution to our email chatter which I thought was worth adding here. It is that valuable reminder that we as patients bring a host of other experiences and knowledge to the table.

Many years ago I came across the Trust Equation - the core of relationships

T=( C+R+I)/SO

Where T= Trust: C=  credibility - a first impressions judgement we make of each other all the time; R= reliability - takes time to build. You can have a solid working relationship based on mutual C+R. The thing that takes a solid relationship and transforms it into a strong, influential and enduring one is I= Intimacy. An interest and investment in each other as people - a shared interest or hobby that builds a strong connection.

It reminds me also of the denominator in the equation - SO - which can destroy all this good work. Self Orientation - playing games or having another agenda destroys trust.

We should never underestimate as patient advocates, the influence we hold based on our open, transparent and passionate support of patients and the patient voice. Often we bring this to bear at a critical moment when other agendas may be swaying an important decision and help find consensus and shared accountability.