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.
