Patient and public involvement - a waste of time? Have we squandered opportunities? Have we drained hope from many of those who became involved?
Well, to be quite honest, I still attend too many meetings, review too many research proposals, see and hear examples of tokenism, inappropriate behaviours and quite frankly dreadful involvement. Pleasingly, there are more and more examples of good practice but they are far from universal.
I have been involved for over ten years and I believe that many things have got better. The culture is much improved, the climate is more friendly and we are increasingly gathering evidence of impact, BUT, we have to find a way of...
Improving Research - Together
If we are going to transform research we need to work together. We should start this dialogue by turning the page from the separate worlds of the patients/carers/public on one side and those people employed in research on the other. We need to avoid labelling ourselves with our illnesses and work together for all those who currently need care and treatment.
Quite simply, we should all want to make a difference, whether by working in research, raising funds through various activities, being actively involved in shaping studies or taking part as a participant in relevant clinical trial. We ought to hope that our actions lead to the developments in research and do not want to be part of any tick box, duplication or unnecessary activity.
The world of research is far from perfect.
Ben Goldacre's excellent book Bad Pharma catalogues major issues around missing data, bias in publication and lack of openness that are an indictment of outrageous and unacceptable behaviour akin to many other recent public scandals. These must be taken up, challenged and addressed.
There are, even now, a few people who seem uninterested in dealing with these problems, some are more interested in working on their own, gaining kudos from published papers, acquiring funding for their institutions or organisations rather than seeing the greater good and potential of collaboration.
Similarly, I feel that charities that do not fully involve people in helping to identify the priorities for research are morally wrong. The charity rules of 'public good' should not be interpreted as just doing things for or to people but 'with' the public.
These instances, however, should not stop us from working together especially with those who want to see improvements. In fact they should actually force us to work more closely to tackle these issues, correct the wrongs and move forward. This does not mean that we have to necessarily agree all the time yet we can learn from each other.
The direction for this transformational approach ought to be a statement of on the overall importance of honesty and transparency in research, about the need for high quality studies and the value of systematic reviews.
It is then crucial to identify those challenges that we have in common and work in partnership to create, a movement for change leading to improvement in the experiences of treatment and care for future patients, their carers and families.
Without a clear purpose to working together we are likely to waste the chance to make a difference.
The focus needs to be a dialogue where we can all be informed by the insights and knowledge that we each bring from our differing perspectives. This can no longer be a one-way process where patients, carers and members of the public are invited in to help inform research. We have squandered opportunities to change things whilst promoting public presence on committees.
Too often we have brought patients, carers and the public into the discussion after the event – to learn in hindsight. There is value in this and lessons to be learnt. Sometimes we involve the people to gain insight – e.g from patient experience. But wouldn’t it be better if by working together we could consider foresight – e.g. “Let’s ask patients what research they want, whether this trial is practical, etc.”
If we want to get to foresight then we must become more specific about...
What it is we want to improve?
· Is it policy and direction, the organisational structures and/or aspects of the research process and individual projects?
(These require different approaches and we have to be clearer about each context, and purpose, impact and benefit we seek to achieve)
How the public voice can be heard?
· How should to inform, form and influence research and where should it be listened to for best effect?
(These approaches need separate planning and we need to be clearer about our role and responsibilities)
What is required to enable those voices?
· What learning and development opportunities are needed/wanted?
(These must state a common understanding of learning and move away from training people to be ‘like researchers’)
In each and all of these we must ask how we implement equality legislation and address health inequalities.
Of course, I want to shout the phrase 'no decision about me without me' and yet I also want resources spent on treatments and not on unnecessary consultation or inappropriate involvement.
Although I support the demographic entitlement of involvement we have to spend money and time more wisely. It has to be about what can be gained and achieved by involving different individuals, groups and communities in developing healthcare research to improve service delivery. This should make us question paying people to attend meetings unless there are clear outcomes.
Most people want to know that their voice is heard; that their experiences are used to effect change; that feedback is provided about what happened as a result. The degree of their involvement may be quite small and make a huge difference whereas other may want to play a larger part and change things slowly over time.
I do not get the sense that mass numbers of the public want to be actively 'involved' by sitting on committees. I would go further and say that committee representation attracts too many people like me who like to understand organisational structures and processes, are able to express their views with some clarity yet are mainly white, middle class and retired from a professional background.
There is nothing fundamentally wrong with these characteristics. Well, I would say that wouldn't I? We do have a part to play but a richer, more culturally diverse, robust dialogue is required about the value, aim and practicality.
Social media offers as much potential as real active local community action. It is not a question of either / or but with new regional structures there are opportunities to do both in a coherent and joined up manner.
We, who are involved, must be advocates for the many different effective forms of involvement and engagement. We need to invite those we interact with to get inside local communities, to use a variety of methods for involving people and to make better use of social media. We have spent time learning about research and now it is time we helped the researchers learn about people. We should help ensure that the involvement is appropriate and proportionate.
Public lay members of research meetings must shift away from 'being the lay representative' to being an advocate for involving people in the whole process, advising on different types of engaging and involving as well as helping groups to make those connections.
We who are involved have to ask better questions of ourselves, our involvement, the groups on which we sit and the attitude, behaviour and actions of the NHS. It needs to become about leadership rather than representatives. It is a shift towards advocating for the patient voice and becoming activists for change.
This means we need to give greater consideration as to how we help others to use their voices, develop their skills and build their confidence rather than necessarily being the voice. In this way we might make the very best use of our time and efforts.
I shall stop here as I think the next part of this blog mini-series will be about learning and development. Thank you for all the very positive emails about the Obituary for PPI.