Power to the people: what will bring about the patient centred revolution?BMJ 2013; 347 doi: https://doi.org/10.1136/bmj.f6701 (Published 08 November 2013) Cite this as: BMJ 2013;347:f6701
All rapid responses
Hodgkin and Taylor highlight that the rhetoric of a patient centred is not put into practice in NHS decision making. I practise in an area with large numbers of older people (equivalent to predictions for England and Wales in 2045) and chair a group of representative clinicians, managers, social care staff and a voluntary sector representative in Eastern Devon who meet monthly to discuss all aspects of health and social care for older people
We have adopted a series of outcome based statements which aim to put the needs of older people at the heart of these organisations.The statements are written in the first person and represent what we would expect for ourselves if we were in need of services for frail older people.
I drafted them, the group discussed and modified them, then we took them to a public consultation at which 65 people attended including local councillors voluntary organisations and individual older people. The final statements are used in our commissioning discussions and are now explicit in the development plans of our local Royal Devon & Exeter Foundation Trust.
If the NHS adopted something similar and used in in all decision making then the patient centred revolution would have truly begun.
Competing interests: No competing interests
The authors suggest that “Power to the people: what will bring about the patient centred revolution” and it also promised more shared decision making with “no decision about me without me”. It is impossible to make a decision without all of the facts and those lie within the medical records that patients are not allowed to see.
Derek Wanless wrote in his report "ROLES AND RESPONSIBILITIES
Summary and Implications
Population health improvements envisaged under the “fully engaged” scenario would require large changes in individual behaviour across the whole population. The aggregated actions of individuals will ultimately be responsible for whether or not such a scenario unfolds. However, people need to be supported to make better decisions about their own health and welfare because there are widespread, systematic barriers to decision making.
People have limited and often conflicting information on healthy lifestyle choices, they differ in their ability to understand and interpret the consequences of their actions and there are not always mechanisms which encourage individuals to take full account of the wider social costs of their decisions (such as second hand smoke). Engrained social attitudes are not always conducive to individuals pursuing healthy lifestyles. Persistent socio-economic inequalities in the UK, combined with a greater severity of market failures affecting lower socio-economic groups, seem to have contributed to significant inequalities in health outcomes which, unless tackled, will present a significant barrier to many in society becoming “fully engaged”.
These failures should be recognised and can be tackled, not only by individuals, but also by public services, government, media, businesses, society at large, through families, and the voluntary and community sector. Collective action must however respect the individual’s right to choose whether or not to be “fully engaged”.
Power as defined in the 2008 Oxford English Dictionary is “The ability to do something or act in a particular way”. Ivan Illich pointed out clearly in his book titled “medical Nemesis” that doctors have expropriated patients’ health.
Health is the best possible physical, mental and social expression of one’s own genome in one’s own both fated and self engineered environment. Patients must no longer be seen as passive receivers of services but actors in their own health and healthcare.
To do this patients need to be encouraged by their clinical service providers to become knowledgeable, skilled and experienced in managing their own health and health care. This “care” must include immediate care, preventative care, continuing care and health promotion (simply an extension of full healthy living).
Patients cannot be full actors in their care without training, encouragement and without the use of the information about themselves and their health an illnesses that lies in their medical records. This government is committed to allowing all patients to access their GP records (alas only the summary to start off with). This information sharing is one initiative that will "power the people".
Competing interests: No competing interests
The revolution is already happening.
Now putting patients first can indeed be a “pick and mix menu from which decision makers can select according to taste”. Here at the Natural Death Centre charity we do it differently. The Natural Death Centre was established over twenty years and parallels the natural childbirth movement; it’s not dying without drugs we can hear you murmuring it’s about empowering people they have choices and the tools to do so. AS a charity last year alone we received over 40,000 phone calls and emails to our helpline and then there’s prolific media, social media and indeed us commenting on papers like this.
There’s al these buzz words now , ‘patient engagement ‘ ‘ patient voice’ etc. however we just have one phrase ‘Compassionate Communities (tweeters try #CompassionateCommunities ). It’s about empowering a person and a community and promoting social capital. Let health and social services fit around someone’s life and not the other way round.
There are also a lot of people out there who want to help communities embrace their dying and increase death awareness. The Natural Death Centre has established the Natural Death Society so we can be a catalyst to harness people’s enthusiasm and actions. There are a lot of people who want to help go forward to give people to the people who aren’t part of existing structures of health care and so need a vehicle to assist. Hey, we even organised a Pop Up Death Café in the Wellcome coffee shop at their death exhibition and people had travelled form all over the UK to attend – there is a need.
The Dying Matters coalition for England and Wales (part of the National Council for Palliative Care) does some great work promoting compassionate communities and engages with health care and other death workers of how to reach not just out into their local community but into their local community. In Scotland doing similar is Good Life, Good Death, Good Grief/. There are many other initiatives out there.
To give power to the people then one way is access to information and this paper I am reading is closed access. At the NDC we are promoting ‘Open Science’, Open Access to academic papers so mere mortals like me can read them without crossing someone’s palm with silver. We are advocates of evidence based practise and indeed I am completing primary research (well, err writing this …) on the role of palliative care nurses as gatekeepers to research of the dying. (MSc Death & Society).
So practitioners and policy makers - we suggest you don’t try to replicate work and efforts already out there but if you want to give Power to the People, then do just that. Give power to the People rather than trying to reach out. The Natural Death Centre charity runs on a shoe string of good will and a lot of mostly unpaid hours by its two employees and the four volunteer trustees. We need money to go forth and so please do consider helping us to go forth – we even paint our own placards rather than pay the cost of printing !! We’re not against health and social care, far from it, we act as a catalyst to help people to en gage and to take the power, it is their life and death after all.
Hey we’re not just thinking about ‘ Power to the People” revolution but we’re at the vanguard leading the natural death movement. The Natural Death Handbook (fifth edition) available only direct from the charity contains the key leaders and thinkers in the natural death movement. It’s the insider’s guide to dying and funerals.
Competing interests: No competing interests
Thank you for the opportunity to comment on the Editorial by Hodgkin and Taylor1 on how we, as health care professionals and the health system can ‘give power to the people’ and bring about a ‘patient-centred revolution’.
The authors have noted very eloquently the fact that currently, whilst lip-service is being paid to the concepts of empowerment and patient-centred care (PCC), the practicalities of applying the concepts in the field are far from obvious. One of the reasons for this, we feel, is that healthcare-professionals and the health system alike seem to use such terms interchangeably and treat ideas such as patient empowerment and PCC as synonymous; they clearly are not the same thing. Previous work 2, 3 has outlined the differences between the two and, amongst other issues, it has extensively questioned whether any of the defining features of patient empowerment4 can ever be routinely practiced and assessed3. The same work has called for a return to basics so that rather than confusing the concept of PCC with ideas about patient empowerment, it has been suggested that we spend time understanding better what PCC actually is and how it might be implemented in practice.
Another area of concern is the conflation of responsibility with PCC. We would argue that responsibility is not synonymous with a patient-centred approach, as it incorporates a value-judgment which need not be present in PCC; a patient-centred relationship may still be developed without burdening patients with the need to be fully responsible for their health?
So is there a practically-implementable definition of PCC? A lot has been written about the concept5-8 however, in practice, as highlighted by Hodgkin and Taylor1 it is unclear how these ideas can be applied, measured and related to health outcomes. In one study for example, doctors’ patient-centred communication as observed and assessed by a reliable and valid measure of PCC9 was not found to be related to patient health outcomes 2 months later. What was related to a subsequent reduction in patient use of health services and enhanced mental health outcomes post-consultation was the patients’ perception that the visit had been patient-centred 10. So, it would appear that whilst doctors may ‘go through the motions’ in paying lip service to a PCC agenda this will be ineffective unless patients also perceive them to be patient-centred. We suggest that whilst PCC is understood in a range of ways, from ‘being nice’ to patients to implementing fully informed decision-making, such discrepancies in outcomes will continue to be observed. In developing a hierarchy of PCC to deal with the difficulties of implementing PCC in practice8 we propose, beyond a shared understanding of PCC, that a truly patient-centred consultation incorporates the provision of information to patients and the tools to make a truly informed decision. Only then can patients be enabled to take control of their consultations.
Finally, permeating all of the above and perhaps explaining in part why the practice of PCC is as Hodgkin and Taylor describe, is the concept of health inequalities and the extent to which the presence of such inequalities undermines patients’ chances to take part in the PCC revolution; to this end, in this same issue of the BMJ , Marmot and Goldblatt11 discuss the importance of monitoring health inequalities. We concur with this important assertion, particularly in relation to PCC; previous work12 13 has shown that not only do factors such as advancing age and living in deprivation create barriers to participating in patient-centered models, but that middle class patients with professional backgrounds are better placed to seize, and act, upon the opportunities that patient-centered models offer, e.g. understanding and acting upon health information14. Hodgkin and Taylor, like other commentators, suggest that PCC should '…mobilise patients’ own resources and the resources of their families and communities…' 1 . However, there is little consideration of how resources in society are unevenly and often inequitably distributed. The upshot of this is that well meaning concepts such as PCC, choice and so forth, not only fail to acknowledge the unequal resources people have to 'mobilise' to addresses their health needs, but also that the tenets of PCC tend to favour the habits and mindset of people who are already most likely to secure good health outcomes e.g. those on higher incomes, and who are better placed to access appropriate resources which facilitate them being '…managers of their own health'1.
Finally, patient socialization is very important; patients who have grown old in a paternalistic care system where they were expected to ‘follow doctor’s orders’ are unlikely to be ether willing or able to be in a position to sign up to a state of affairs where they are invited to a revolution they have perhaps not chosen or unable to join15 16 17. Equally, patients often need and expect straightforward care, guidance and treatment from healthcare professionals, rather than an array of choices and ‘empowerment’18 .
We end by suggesting that before inviting a ‘patient-centred revolution’, we should perhaps be a little clearer about what the terms of the revolution actually are?
1. Hodgkin P, Taylor J. Power to the people: what will bring about the patient centred revolution? BMJ (Clinical research ed 2013;347.
2. Holmstrom I, Roing M. The relation between patient-centeredness and patient empowerment: a discussion on concepts. Patient education and counseling 2010;79(2):167-72.
3. Asimakopoulou K, Gilbert D, Newton P, Scambler S. Back to basics: Re-examining the role of patient empowerment in diabetes. Patient education and counseling 2012;86(3):281-3.
4. Funnell MM, Anderson RM, Arnold MS, Barr PA, Donnelly M, Johnson PD, et al. Empowerment: an idea whose time has come in diabetes education. The Diabetes educator 1991;17(1):37-41.
5. Mead N, Bower P. Patient-centredness: a conceptual framework and review of the empirical literature. Social Science & Medicine 2000;51(7):1087-110.
6. Mead N, Bower P. Patient-centred consultations and outcomes in primary care: a review of the literature. Patient education and counseling 2002;48(1):51-61.
7. Stewart M, Belle Brown J, Weston WW, McWhinney IR, McWilliam CL, Freeman TR. Patient-Centred Medicine: Transforming the Clinical Methd. Oxford: Radcliffe Medical Press, 2003.
8. Asimakopoulou K, Scambler S. The role of information and choice in patient-centred care in diabetes: a hierarchy of patient-centredness. European Diabetes Nursing 2013;10(2):58-62.
9. Brown JB, Stewart M, Ryan B. Assessing communication between patients and physicians: the measure of patient-centred communication (MPCC) (2e). Working Paper Series. London: Ontario, 2001.
10. Stewart M, Brown JB, Donner A, McWhinney IR, Oates J, Weston WW, et al. The impact of patient-centered care on outcomes. The Journal of family practice 2000;49(9):796-804.
11. Marmot M, Goldblatt P. Importance of monitoring health inequalities. BMJ (Clinical research ed 2013;347.
12. Scambler S, Newton P, Sinclair AJ, Asimakopoulou K. Barriers and opportunities of empowerment as applied in diabetes settings: a focus on health care professionals' experiences. Diabetes research and clinical practice 2012;97(1):e18-22.
13. Newton P, Asimakopoulou KG. A response to Professor Anderson's commentary on Empowerment article by Asimakopoulou, K. European Diabetes Nursing 2008;5(1):36.
14. Newton P, Asimakopoulou K, Scambler S. Information seeking and use amongst people living with type 2 diabetes: an information continuum. International Journal of Health Promotion and Education 2012;50(2):92-99.
15. Patient Empowerment- who empowers whom?, Lancet, 2012.
16. Asimakopoulou KG, Newton P, Scambler S. ‘First do no harm’: the potential shortfalls of empowerment in diabetes. European Diabetes Nursing 2010;7(2):79-81.
17. Asimakopoulou K. Empowerment in the self-management of diabetes: are we ready to test assumptions? European Diabetes Nursing 2007;4(3):94-97.
18. Mol A. The Logic of Care: Health and the Problem of Patient Choice. Abingdon: Routledge, 2008.
Competing interests: No competing interests