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.
.
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.
