Patients promoting and raising awareness of health research
by Jenny Preston, Roger Steel, Karen Inns, Simon Stones and Keith Wilson
“Having lived with long-term conditions for the majority of my life, and through my interest and participation in research, I have been inspired to get involved in shaping the future research landscape, as a patient research ambassador.”
Those are the words of one of our authors, Simon Stones. He lives with juvenile idiopathic arthritis, fibromyalgia and Crohn’s disease. As a patient research ambassador he is influencing the research agenda in a variety of ways.
Simon’s involvement began in 2012, at the age of 18, when he was invited to become a young person’s representative on a National Institute of Health Research (NIHR) Clinical Research Network (CRN): Children, namely the Paediatric Rheumatology Clinical Studies Group, working in collaboration with Arthritis Research UK. This group, consisting of health professionals, academics, patients, parents, and charity representatives, shapes the research that is prioritised in the UK for young people with arthritis and related conditions.
Readers in Australia might ask what is the NIHR Patient Research Ambassador Initiative and why was it set up?
The National Health Service in England is founded upon a common set of principles and values that bind together the communities and people it serves – patients, the public and the staff who work with it. Clinical research is important in the NHS. It is the way that we gather evidence to improve treatments and care. By taking part in clinical studies, patients are helping others, and the NHS, to improve. Research in the NHS is managed and supported by the NIHR, which is funded through the Department of Health, the ministerial department of the United Kingdom government responsible for health and social care policy in England.
The NHS Constitution includes pledges about access to information and informed choice. The handbook to the draft NHS Constitution explains how these pledges will apply to research. It says:
"Research is a core part of the NHS. Research enables the NHS to improve the current and future health of the people it serves. The NHS will do all it can to ensure that patients, from every part of England, are made aware of research that is of particular relevance to them. The NHS is therefore putting in place procedures to ensure that patients are notified of opportunities to join in relevant ethically approved research and will be free to choose whether they wish to do so”.
Due to policy development and changing expectations over the last few years, patients have become increasingly influential in the NHS. Patients, carers and members of the public who have experienced research are often the best placed to promote and raise awareness of research in their local NHS care organisations, which can help ensure that people using local NHS care have the best opportunities and choices about taking part in research studies.
Following initial exploration as to how best to support patients, carers, and public to raise awareness of research, a project was set up in 2012 promoting the role of ‘Patient Research Ambassadors’. In 2015 this was re-launched as the Patient Research Ambassador Initiative. The initiative is led by the NIHR Clinical Research Network and works in partnership with various NHS Stakeholders who all have a vision of a person-centred research culture as part of NHS organisations across England.
The main aims of the initiative is to:
- Promote the role of Patient Research Ambassadors in local NHS services
- Help improve how NHS patients can find out about and participate in research in their local NHS organisations and encourage local NHS organisations to establish and support Patient Research Ambassadors to help make this happen.
What do we mean by Patient Research Ambassador?
A Patient Research Ambassador is someone who is passionate about supporting delivery of person-focused research and someone who promotes health research from a patient point of view. They could be a patient, service user, carer or a member of the public who is enthusiastic about health research and willing to communicate that to other patients and the public, as well as healthcare professionals.
Patient Research Ambassadors can choose to be involved in a number of ways dependent upon their personal and work commitments. Patient Research Ambassadors could simply get involved with various raising awareness campaigns, such as the NIHR ‘Ok to Ask’, or taking part in events for International Clinical Trials Day. Some individuals volunteer in a role promoting research within an NHS Trust. Others may combine this with active involvement in helping to shape how individual research studies are and designed and delivered to patients.
Keith Wilson, a full-time fully funded Patient Research Ambassador for the Liverpool Heart and Chest Hospital NHS Foundation Trust talks about his role:
“In May 2014 I became the first person to be employed full-time within the NHS to undertake a Patient Research Ambassador role. I am a former heart patient. I have, like many others experienced the feelings of fear and vulnerability of living with a health condition. I am not an academic, just an ordinary individual”.
Keith is responsible for representing patients/participant’s interests in all aspects of research within the Trust. His knowledge and experience through his involvement and participation in clinical trials, brings a unique perspective to research. Not only can he appreciate the complexity of a research project but also the feasibility of patient participation within the project. Keith works closely with the patients, research nurses and clinicians on a daily basis and has become the link between the professionals and patients, organising focus groups made up from people with the experience of a relevant condition.
Simon Stones, whose comments commenced this article, is someone with valuable experience and he has since become affiliated with a number of organisations and movements to help shape the research landscape. In 2015, he was appointed the UK youth representative with the European League Against Rheumatism group’s young patients’ working group. In addition, he works with a number of other organisations as a lay reviewer and public contributor.
Simon typically spends around three to four hours a week doing Patient Research Ambassador related work, and sometimes more when invited to conferences and meetings. It is entirely up to individuals how much time they can give to this role, and what their role is, but support and guidance is essential and that is one of the key aims of the initiative.
Can Patient Research Ambassadors make a difference?
Keith Wilson believes Patient Research Ambassadors can make a difference:
“Without doubt not only can we make a difference, but by being involved in research design and delivery in partnership with researchers, we can improve and make any research OUR research”
For further information about the Patient Research Ambassador Initiative, please visit: http://www.nihr.ac.uk/patient-research-ambassador
Follow us on Twitter @NIHR_PRAI and Tweet using #researchambassador
For further information about the NIHR Clinical Research Network Patient and Public Involvement team visit: https://www.crn.nihr.ac.uk/can-help/patients-carers-public/
Jenny Preston is Patient and Public Involvement Lead, NIHR Clinical Research Network, Roger Steel is Patient and Public Involvement Manager, NIHR Clinical Research Network and Karen Inns is Patient and Public Involvement Lead, NIHR Clinical Research Network. Simon Stones and Keith Wilson are Patient Research Ambassadors.