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What matters to you?

Updated: Apr 8, 2023


The question ‘what matters to you?’ guides the PATCHATT patient leadership approach. What we are trying to get at is, what are the things which are important to you at this stage of your life? What things do you value and want to hold on to? What things do you not value and would seek to change?


Some people would see this as a strange starting point for patient leadership activity. A brief look at the history of the concept throws light on why this is the case. Patient leadership underpins the ancient Asklepian tradition, where active patient engagement was seen as a key factor in the healing process (Downie, 2012). The 1978 World Health Organisation (WHO) Alma-Ata declaration of an individual’s right and duty to participate in their care draws on this tradition. This perspective was in enshrined in policy in the Ottowa Charter (WHO,1986), anticipating the new public health movement’s focus on healthcare and community partnerships (Sallnow et al., 2016) and pre-figuring patient leadership.


Although patients have often been viewed as the ‘done to’, the passive objects of the medical ‘gaze’ (Foucault, 1973), things are changing. For example, a 2012 report from National Voices advocating further investment in patient leadership influenced NHS England’s (2013) commitment to patient involvement in national policy, work programmes and commissioning, a position maintained in the NHS (2014) Five Year Forward View.

Within this shifting policy setting, forms of patient leadership vary. They can be entrepreneurs, community enablers, improvement champions, representatives and peer supporters (Centre for Patient Leadership, 2013). However, in practice it appears that patients often reman in responsive agenda setting power remaining with healthcare professionals and researchers.


It is for this reason that the question, what matters to you? is so important in the PATCHATT initiative. It signals that here, the patient is in control. The agenda is theirs. Support will be given where needed to achieve their ambitions but the focus will be solely on what matters to them, what they wish to achieve in the time they have left, not how they can fit into an agenda designed by others. We believe this patient centrality can diminish the sense of loss of identity which often accompanies a life-limiting illness (Exley and Letherby, 2001). Patient agency, that is, the ability to make a difference to one’s own life and that of others (Bandura, 1977) is restored and with it a positive sense of self.


It is amazing what one little question can do! Try it on yourself - what matters to you?



References


Bandura, A. (1977) Self-efficacy: Toward a Unifying Theory of Behavioral Change. Psychological Review, 84(2), 191-215.


Centre for Patient Leadership and National Voices (2013) Bring it on – 40 ways to support patient leadership. Retrieved 22 April 2022 from Bring-it-on-40-ways-to-support-Patient-Leadership-FINAL-V-APRIL-2013.pdf (engagementcycle.org)


Downie, R. (2012). Paying attention: Hippocratic and Asklepian approaches. Advances in psychiatric treatment, 18, 363-368.


Exley, C. and Letherby, G. (2001). Managing a disrupted lifecourse: issues of identity and emotion work. Health, 5(1),112-132.


Foucault, M. (1973) The birth of the clinic: an archeology of medical perception. New York: Random House.


National Health Service (NHS) England (2014) The Five Year Forward View. Retrieved 2 July 2021 from www.england.nhs. uk/five-year-forward-view


National Health Service (NHS) England (2013) Putting patients first. The NHS England Business Plan 2013/14-2015/16. Retrieved 21 April 2022 from https://www.england.nhs.uk/wp-content/uploads/2013/04/ppf-1314-1516.pdf


National Voices (2012) Not the Francis Report. A National Voice report on how to ensure safety and quality. Retrieved 24 April 2022 from not-the-francis-report.pdf (nationalvoices.org.uk)


Sallnow, L., Richardson, H., Murray, S. and Kellehear, A. (2016) The impact of a new public health approach to end-of-life care: a systematic review. Palliative Medicine, 30(3), pp. 200-211.


World Health Organisation (1978) Declaration of Alma-Ata. International Conference on Primary Health Care, Alma-Ata, USSR, 6-12 September. Retrieved 5 August 2021 from https://www.who.int/teams/social-determinants-of-health/declaration-of-alma-ata


World Health Organisation (1986) Ottawa Charter for Health Promotion. Retrieved 5 August 2021 from https://www.euro.who.int/__data/assets/pdf_file/0004/129532/Ottawa_Charter.pdf







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