(c) MRSA Action UK May 2011
Royal College of Nursing
of the United Kingdom
The 2011 International Nursing Research Conference
Monday 16th May 2011
Harrogate International Centre
So, I need to involve some patients:
Active public involvement in developing a research submission
Maria Cann and Andrea Whitfield of the Healthcare Associated Infection Research Network attended the International Nursing Research Conference to share and relate the benefits of involving patients and working collaboratively in research bids for funding.
Andrea demonstrated how members had been recruited through an initial event in London and through networks; local groups and through other members and patient groups, all of whom have an interest in healthcare associated infections and research; no other specific skills were required. The Healthcare Associated Infection Research Network regularly incorporates training into workshops for patient representatives who wish to join the Service Users Research Forum, for example in running focus groups, undertaking 1-1 interviews and reviewing literature. Training is important to ensure that all members of the collaborative research team have the skills and confidence to contribute.
The Service Users Research Forum (SURF) worked with researchers to undertake a research project. It was important that the subject of the research was identified as a priority by the SURF group. A blank canvas workshop was held with five members, two priorities emerged as being favoured by the group:
- A study on the emotional, physical and psychological impact on patients and carers of people who have survived a healthcare associated infection.
- A study on patient experience of MRSA screening prior to hospital admission
The Healthcare Associated Infection Research Network scoped out suggestions using expert knowledge of the issues, literature review, and liaison with colleagues.
A questionnaire style paper presented various questions to facilitate the group in interrogating each priority and deciding which one to take forward.
Importantly, at this stage SURF was able to make a valuable input not just in presenting the issue as being of concern to patients and their carers but in being able to highlight a range of experiences, resulting from the screening process, and the potential impacts these were having.
Maria outlined that the experience 'lay' service users bring that professional researchers can't is the anecdotal evidence, in the case of the MRSA Screening proposal, the patient experience that had been fed back to the self-help patient charity MRSA Action UK.
Universal MRSA Screening was new, so in this instance Maria was able to feed in a perspective where little 'professional research' if any, had been conducted. Aspects of the patient experience such as the confusion over colonisation and infection, and help needed with decolonisation regimes came to the fore in contact with patients and members of the public, as did fears and anxieties due to perceptions of very frightening reports about MRSA in the media.
Giving practical help with decolonisation and providing the right information for patients is important, but the clinical expertise was essential to establish the right research question and tease out how we get to the best outcome for patients and their carers.
Based on the group's feedback, and the skills of the Healthcare Associated Infection Research Network and partners, 'patient experiences of MRSA screening' was chosen as the research topic. The lay involvement with the experts complemented each other, and led to shared learning.
The National Institute for Health Research's Research for Patient Benefit Programme was selected as it 'welcomes proposals that have been developed with patients and the public and that relate to patient and service user experience'. We needed to identify an NHS partner to work with us.
Dr Jacqui Prieto Senior Clinical Academic Research Fellow. School of Health Sciences University of Southampton had previously attended a SURF workshop for researchers interested in learning more about service user involvement, and had expressed an interest in working with SURF. So we approached her to see if she would be interested in collaborating.
Maria outlined that we needed to submit an initial outline proposal which was developed by the research network and then this was reviewed with SURF members to make sure it focussed on the issues we'd identified.
The outline submission was successful and the Healthcare Associated Infection Research Network and NHS partner then led the process of working up the full submission.
SURF reviewed and contributed to various drafts of the submission; in particular drafting the lay summary; providing evidence for the importance of the research; reviewing the background and literature review; commenting on proposed outcome measures and value to patients.
Many iterations were reviewed by the project team and SURF and consensus reached. It was worth highlighting that it was important to include costings for SURF researcher as part of the budget and this was included at a research assistant level.
So, 12 months after the initial idea conception we submitted our proposal. We than had a seven month wait for the outcome which unfortunately was unsuccessful. However, we received glowing feedback on the service user involvement.
It was important to debrief and consider how to take the project forward. We reviewed the outcome and other information on the issue that had been published since our application and we have recycled the work and are exploring other funding opportunities. We have already started work on a collaborative project on another SURF identified issue.
With many views involved we have to ensure that an agreement was made and that everyone was happy with the proposed research. Identifying roles is important for SURF in exactly the same was as for other members of the research team. Training is also important to make sure that everyone can make a valid contribution.
The process takes time as funding cycles are long, in fact we postponed the application by three months to a later call as we weren't ready. All in all the collaboration meant that expertise from professional researchers and service users was combined to maximum benefit.
Maria said "I learned a lot from the professional researchers, not coming from a clinical research background before joining SURF, I had very little understanding of the process involved in gathering scientific evidence to inform research proposals, and I think the lay members of SURF have managed to bring a fresh perspective to the experts' thinking too".
Time is at a premium to encourage lay user involvement so there is a need to think of ways of networking without the travelling, use of teleconferencing to discuss proposals can be useful, it can also serve to educate and inform. SURF makes the best of its workshops so that we have opportunities to learn from each other when we do meet up. Maria's top tip to clinical researchers - "Don't leave the involvement of lay members until the end of process, involve us at the beginning you might be surprised at how much we can contribute". The presentation is available here.
There were other examples of involving patients in research at the conference that were well received where patient representatives were treated as equal partners in collaborative research. Where patients helped to review analysis, questions arose over conflicts in interpretation of findings, if this was the case both views would be published. There was one researcher who believed that holding a focus group was patient involvement, Maria outlined true engagement was about discussing care with the patient, informing and helping them to make informed choices - the presenter did not agree, so a degree of tokenism does still exist in terms of engagement. We need to continue to shift the culture to 'nothing about me without me' (Equity and excellence: liberating the NHS)
There was an interesting presentation on the political perspective on public health policy outlining the libertarian influence on current policy which dealt with intervention and the move away from what has become known as the 'nanny state'. Extracts from the presentation can be found here.
When it comes to improving people's health and wellbeing, we need a different approach. We cannot just ban everything, lecture people or deliver initiatives to the public. This is not justified and will not work. Nor should we have one-size-fits-all policies that often leave the poorest in our society to struggle. [Healthy Lives, Healthy People 2.28]
If you or someone you care about has been affected by a healthcare infection and you wish to discuss this with us, please contact us at firstname.lastname@example.org