Damien Ridge, Professor of Health Studies and Head of Psychology at the University of Westminster, writes on how healthcare professionals need to look more closely at patient evidence…
“In thinking about the College of Medicine’s mission to empower patients, I am reminded of how personal stories about our health and well-being provide an ‘unmatched window’ into patient experience [1], and bring with them an authority that only personal experience can bring [2].
Patient experience ought to be considered as evidence in and of itself. Certainly, the Health Experience Research Group, run out of the University of Oxford, has pushed this agenda. They collect and examine 1000s of patient stories about health conditions via rigorous research, the results of which are accredited by the Information Standard as a reliable source of evidence-based patient-centred information [3].
How to empower patients? Head of Psychology at University of Westminster, Damien Ridge, says doctors should use patient evidence more when trying to support them through their condition
Research shows patients develop their own knowledge-base and helpful metaphors via their personal stories, to shed light on and convey their deeper experiences to audiences who may not be familiar with what they have been through [4].
The importance of listening to patient experiences is increasingly central to health policy in the UK, and qualitative research projects are changing policy [5]. In 2013, for example, NICE Quality Standards on asthma management drew considerably on a qualitative asthma study.
But the power of patient stories is to not just to describe experience, they also reveal how patients are themselves shaped by their stories [6].
In our own qualitative research on how patients go about recovering from depression, we elaborated for the first time how people actually go about recovering from depression [7].
Amongst other contributions, we worked out the signposts involved in recovery, the ‘tools’ used, and the potential of patient stories themselves to contribute to recovery (or not), and in turn, this work influenced NICE guidance [8].
Another example includes the range of confusing controversies about Chronic Fatigue Syndrome (CFS)/ME treatments in recent years, including what treatments work and do not work [9].
Lost in the debate, however, is an understanding of how to best support people with CFS/ME, including asking the question “What do patients need or want?”, whether in medical consultations, social care or everyday life.
So, in a new NIHR study (with Carolyn Chew-Graham at Keele University), we plan to gather all the key qualitative studies that have used interviews and group discussions to specifically examine how people with CFS/ME experience different kinds of support, the support they prefer, and any preferences that they express for informal, health or social support.
We will use a method known as ‘meta-ethnography’ to thoroughly search for published studies, and assess and combine their narrative findings to help us to develop a solid understanding about the best ways of providing support to people with CFS/ME.
Amongst all the confusing information on the internet for CFS/ME patients, it is necessary to understand approaches that patients themselves find useful, if we are to develop better CFS/ME care in the future.
To conclude, if professionals can become more skilled in this kind of ‘narrative competence,’ and consider patient experience as a key kind of evidence to weigh up with other kinds of evidence, where patient stories powerfully shape realities, then we have a chance to make a real difference in supporting wellbeing in more positive ways.”
1). Ochberg, R.L., Life Stories and the Psychosocial Construction of Careers. Journal of Personality, 1988. 56(1): p. 173-204.
2). Hyden, L.-C., Illness and narrative. Sociology of Health & Illness, 1997. 19(1): p. 48-69
3). Smith, S. and M. Duman, The state of consumer health information: an overview. Health Information & Libraries Journal, 2009. 26(4): p. 260-278
4). Fixsen, A.M., “I’m Not Waving, I’m Drowning”: An Autoethnographical Exploration of Biographical Disruption and Reconstruction During Recovery From Prescribed Benzodiazepine Use. Qual Health Res, 2015.
5). Gann, B., Understanding and using experiences of health and illness: the policy landscape, in Understanding and Using Health Experiences, S. Ziebland, Coulter, A., Calabrese, J., Locock, L, Editor. 2013, OUP: Oxford.
6). Lewis, B., Narrative and psychiatry. Current Opinion in Psychiatry, 2011. 24(6): p. 489-494 10.1097/YCO.0b013e32834b7b7f.
7). Ridge, D. and S. Ziebland, “The Old Me Could Never Have Done That”: How People Give Meaning to Recovery Following Depression. Qual Health Res, 2006. 16(8): p. 1038-1053.
8). National Collaborating Centre for Mental Health, Depression: The Nice Guidance on the Treatment and Management of Depression in Adults. 2010, The British Psychological Society & The Royal College of Psychiatrists: London.
9).Editorial, Patients’ power and PACE. The Lancet, 2011. 377(9780): p. 1808.
