Young People's Views of Research

The NIHR Medicines for Children Research Network Young People's Advisory Group met recently and developed their wish list. Many thanks to Kirsty Widdowson, consumer liaison officer for facilitating this event and sending these pictures and images. They are brilliant.

Top 10 ways to get more people involved in research in the East Midlands.

1. Advertise research widely throughout East Midlands- TV, Radio, Magazines, Twitter, Facebook, Posters:

To get more people involved in research we need to raise awareness of research in general using a wide range of different methods. This will help people to think about research at any time whether they are in a hospital or home environment. People lead busy lives and need messages to be clear, simple, shared with them many times through a powerful line or message that explains the importance of research how they can get involved in research.

2. Show patients and the public how research is done:

Highlight to patients and the public how research is carried out, use videos + films to capture how a patient may get involved in a research study as a study participant and the role of a lay person for example, a member of the MCRN Young Persons Advisory Group. This will help more people understand exactly what goes on within research and the different ways they can become involved in research throughout the East Midlands.

3. Research that meets patient’s needs:

Understand that patients want research that meets their needs. Highlight to patients and the public the importance of being involved in research at the earliest stages to help raise awareness of the areas they want more research to be carried out in.

The more research that is carried out that has listened to patients need and their experiences will help more people feel valued and empowered to get involved in research.

4. SMILE-talk to people about research:

Smiling and talking to patients about research is the first step to getting more people involved in research. Good body language and simple language which is appropriate are very important when talking to the public/patients about research and how they can be involved. The more we SMILE at people and talk about research opportunities the more people will want to get involved. A friendly smile and conversation with someone about research may be the encouragement that person needs to get more involved in research.

5. Incorporate whole families:

Make sure that the whole family is included; if someone is involved in research think about how this may impact on the whole family whether the person is a study participant or lay reviewer. Research with children, young people must include the whole family; parents/carers must feel as important as the study participant themselves or if children/ young people are involved in research as lay reviewers how does this impact on the parents/carers, are they involved themselves, would they like to be? Engaging with the parents/carers helps keep them informed and encourages them to be more involved in research themselves.

6. Fill the hospitals with research:

There needs to be more information, leaflets, triggers that we can provide to get people thinking about research when they enter a hospital setting. This will encourage more people to think about ways they can become involved in research. Patients and the public should walk into a hospital and know research takes place in that setting with lots of information for them to read. MCRN East YPAG have thought of their own ideas about how we can promote and raise awareness of research within hospital settings and have come up with lots of different ideas.

7. Provide that quality experience + share positive experiences:

Think about how you can make the experience of that particular person of more quality. What are they looking to get out of this experience? If they are helping to support researchers at an early stage as a lay reviewer do they want to know more about research in general, how it works and what different research is being carried out at the moment etc. If they are a study participant can we make them feel more at ease, comfortable and relaxed etc. Create videos of real life positive experiences of people talking about their experiences within research and have it showcased in as many places as possible.

8. Trust:

Trust is an important part in encouraging any patient or members of the public to become involved in research. It’s important to have trust between a patient and their doctor so they can openly discuss research involvement opportunities and it’s also important to have trust between a lay reviewer and the researcher. Building trust within these relationships means more people would feel valued and empowered to get involved in research, share their own experiences and ideas with researchers etc.

9. Get rid of stereotypes- ‘Guinea Pigs’ ‘Negative experiences’:

We need to raise awareness and showcase people’s POSITIVE experiences of research including adults, children and young people. The more positive and real life experiences we can share with patients and the public will slowly help to get rid of research stereotypes. The positive experiences need to be put out to the wider world in a variety of different ways to encourage more people to get involved in research.

10 Speak to the public:

Speak to the public to find out what they feel would encourage more people to get involved in research. Do they want more information on research, raise awareness of what research actually goes on within our hospitals. The more feedback gathered means we can provide exactly how patients and the public would like more information on research and listen to their views on what would help to encourage more people to get more involved in research.

These 10 points were discussed by the NIHR Medicines for Children Research Network (MCRN) East who are based in Nottingham.

Mike's Top 10

My Top Ten are....

1.      VOICE of patients, service users, carers and staff

2.      VALUES of the organisations aligned, explicit e.g. innovation

3.      VARIATION – that we understand it first, then tackle it over time

4.      VISIBILITY – of leadership

5.      NETWORKS TO REFRAME    

•        scan the environment
•        ‘share the wealth’
•        a few research active organisations  to ALL
•        a few core enthusiasts to all on 'innovation' ticket

6.      INNOVATION – if we just do more of the same the NHS runs out of money faster – Diabetes, Dementia, Depression, Demands swamp us we need more ‘I’

7.      RESEARCHERS STAY RELEVANT [and predict future relevance] – inventions and translation and diffusion

8.      RESEARCHERS BE SERVICE FACING

9.      RESEARCH FACING SERVICES may be the consequence

10.   It is then, and only then, that we can drive on with what got me out of bed, and I am sure many others, and I made sure this is the sole purpose of our East Midlands AHSN

     ‘to work at the limits of science, human skill and knowledge, to save lives and improve health, when people are most in need’

Michael's Top 10

Michael's Top 10 for getting more people involved locally in research for the East Midlands...

My Ten ideas on how to improve the involvement of everyone especially the public in research.

1. Get the message across on how important research is to the public. Two Suggestions ‘Take part in Research to save lives’ ‘ By taking part in Research you can improve the NHS’ with the contact details. Placed in all feasible public places.
2. Institute of Mental Health to list and publicise ten successful outcomes of their research.
3. Encourage people who have been a participant in a research trial to post on Patient Opinion.
4. A large article in the Positive Magazine of researchers and participants experience of research and their pleasure in helping improve the Nation’s health. Including contact details
5. Message to all staff and members of the Trust and its associates to join a database of willing participants in research.
6. All NHS staff where feasible to ask people if they would like to take part in research and add their details to a list.
7. Dispel the idea of aged wild haired professors in white coats playing with test tubes in a laboratory. By showing normal looking staff doing their research by data searches and interviewing etc in a short promotional film.
8. Stories from patients whom have had their lives saved or improved by research.
9. Patient Experience questionnaire to include question on ‘Would you be prepared to take part in research projects to improve your and other people’s health.
10. Ask researchers on their ten ideas. It may educate and inspire them.

Michael Osborne 16 June 2013

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.