Derek's Top Ten

Derek’s 10 Steps for getting more people involved in research locally in the East Midlands

We could make such a difference with and for local people who live from Sleaford to Loughborough, from Rutland to Baslow and from Matlock to Mansfield by getting more people participating, involved and engaged in research to improve NHS health and social care for those who need and use services.

Steps 1 – 5 explore the local landscape

1. The East Midlands has a rich history of people working and living here to improve health Jesse Boot (Boots), Peter Mansfield (MRI), Stewart Adams (Nurofen). We should follow their lead and aspire to make this a region where the community knows about research and researchers and industry to want and need to be an integral part of its future.

Step 1: Develop a coordinated series of annual and other events to include service user groups, patients, carers and the public across the East Midlands to share the ambition and help inform, form and influence research. We should also see contributions and presence in meetings, workshops, committees, conferences and boards as part of that shared endeavour.

2. The East Midlands Academic Health Science Network (AHSN) provides an ideal opportunity to transform health outcomes and the delivery of healthcare in towns and villages alongside our major cities. The Collaborations for Leadership in Health Research and Care CLAHRC http://www.clahrc-ndl.nihr.ac.uk/clahrc-ndl-nihr/index.aspx http://www.clahrc-lnr.nihr.ac.uk  The evolving Local Clinical Research Network (LCRN) will have greater local ownership and responsibility for the delivery research studies to time and with set targets for recruitment.

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Step 2: Reach out beyond the major cities to ensure that people know about research and the opportunities to become involved by starting with our local patient groups and organisations and asking their ideas for engaging with communities. Develop an accessible ‘East Midlands Research Newsletter’ for all with some public members on the editorial committee.

3. NHS Commissioning arrangements for England place a duty of Clinical Commissioning Groups to inform people about research

Step 3: Set up a local register for the public to state their interests in research to help inform people about the opportunity to take part in research, particularly about research appropriate to them in line with the NHS Constitution. Develop our own ‘Mystery Shopper’ campaign to monitor progress.

4: The Francis Report into care at Mid-Staffordshire Trust clearly states: “The patients must be the first priority in all of what the NHS does”. High quality research is part of what the NHS does well and people want research that addresses their needs.

Step 4: Listen to and act upon the information gained from people and their carers with direct experience of a condition as a means of prioritising research that is relevant and appropriate to local needs.

5. The Research Excellence Framework (REF) for Higher Educational Institutions (HEI) requires research to demonstrate ‘impact’. This is defined as an effect on, changes or benefits to the economy, society, culture, public policy or services, health, the environment or quality of life beyond academia. The advice also states that the activity should go beyond 'business as usual' engagement or involvement.

Step 5: Encourage creative and imaginative ways of adding social media, pop-up events as a means of engaging and involving people in research to highlight the potential impact on local people’s lives. Promote ‘research awards’ for innovative practice as part of existing NHS gatherings.

Steps 6 – 10 explore the elements needed for change.

6. Leadership is required at all levels to enable local people are fully engaged, involved and able to take part in research. Those with responsibility need to ensure that the principles of openness and access have sufficient resource and support. Equally we should develop patient leaders to raise the voice of patient issues and experience.

Step 6: Establish a programme to develop our own local Patient Leaders and Research Ambassadors to encourage the number of General Practices, Trusts, Care Homes to become more ‘research active’.

7. Active Involvement is a valuable means of grounding research, a reality check for all aspects of research design, delivery, application and governance. Every National Institute for Health Research (NIHR) research proposal requires a statement on how patients and the public will be actively involved. We should ensure that the involvement is ‘fit for purpose’.

Step 7: Ensure that we appropriately involve people explaining the context and providing concise statements of the purpose, the intended impact and the longer-term benefit to our communities.

8. A culture of partnership working, mutual understanding and respect. Research is competitive but that does not exclude collaboration. We should be learning from each other and breaking down any silo-based thinking. Leicestershire, Northamptonshire & Rutland - Research Engaging with Patients & Public LNR- REPP and the development of a Nottingham, Derbyshire & Lincolnshire NDL REPP, both illustrate how those working locally in research are coming together with the NHS.

Step 8: Develop a collaborative and coordinated programme of events, workshops to help people learn together about research, how to involve people, science, communities, etc.

9. People who take part in research do so, for the most part, on a voluntary basis. They do so to help others in the future. It should be the case that they receive information about the results of studies in which they have participated. Equally people should receive some form of feedback about their involvement and the difference it has made.

Step 9: Encourage the reporting of study results and provide feedback to people who get involved through regular East Midlands Research updates and other means.

10. Recognition and praise are powerful motivators for success when matched with relevant challenges. Patients and carers have significant circles of friends and colleagues who could be brought in to assist.  

Step 10: Create East Midlands Research Champions and Heroes to recognise the ‘gift’ that study participants offer to research on International Clinical Trials Day.