Shared decision-making: nothing about me without me

It was with great pleasure that I read the UK government’s “Equity and excellence: liberating the NHS” white paper. It enshrines the principle of patient-controlled medical records with wonderful phrase “nothing about me without me”.

2.1  The Government’s ambition is to achieve healthcare outcomes that are among the best in the world. This can only be realised by involving patients fully in their own care, with decisions made in partnership with clinicians, rather than by clinicians alone.

2.2  Healthcare outcomes are personal to each of us. The outcomes we experience reflect the quality of our interaction with the professionals that serve us.[15] But compared to other sectors, healthcare systems are in their infancy in putting the experience of the user first, and have barely started to realise the potential of patients as joint providers of their own care and recovery. Progress has been limited in making the NHS truly patient led.[16] We intend to put that right

2.3  We want the principle of “shared decision-making” to become the norm: no decision about me without me. International evidence shows that involving patients in their care and treatment improves their health outcomes,[17] boosts their satisfaction with services received, and increases not just their knowledge and understanding of their health status but also their adherence to a chosen treatment.[18] It can also bring significant reductions in cost, as highlighted in the Wanless Report,[19] and in evidence from various programmes to improve the management of long-term conditions.[20] This is equally true of the partnership between patients and clinicians in research, where those institutions with strong participation in clinical trials tend to have better outcomes.

As the only provider of patient-controlled medical records that already integrate into the NHS existing infrastructure, we applaud the government’s leadership on this. Previous governments around the world had been lobbied by existing technology providers, and by clinical teams, who said that it is impossible to give patients control of their records. This is not true, and as the UK government has said, it is not desirable either.

Last week at the Lifepsychol quality of life conference I gave a lecture on how patient-controlled records are possible, and how they will transform health care around the world for the better.

Footnotes from the report

15 World Health Organization defines a high performing health system as one that should be “responsive to people’s needs and preferences, treating them with dignity and respect when they come in contact with the system”, The Tallinn Charter: Health Systems for Health and Wealth Draft Charter. WHO, (2008). Goodrich, J., and Cornwell, J., Seeing the person in the patient: the Point of Care, The King’s Fund (2008).
16 “There is a need for significant progress to improve issues such as the provision of information, noise in hospitals, and the engagement of patients in decisions about their care”, Richards, N., and Coulter, A., Is the NHS becoming more patient centred? Trends from the national surveys of patients in England 2002-2007, Picker Institute (2007).
17 Fremont, A.M., et al ‘Patient-centred processes of care and long-term outcomes of myocardial infarction.’ Journal of General Internal Medicine 16: pp.800-8, (2001). Bechel, D.L., Myers, W.A., Smith, D.G., ‘Does patient-centred care pay off?’ Joint Commission Journal of Quality Improvement 26(7): pp.400-9, (2000). Kaplan, S.H., Greenfield, S., Ware, J.E., ‘Assessing the effects of physician-patient interactions on the outcomes of chronic disease’ Medical Care 27(3)Suppl: pp.S110-27, (1989).
18 Stevenson, F.A., Cox, K., Britten, N., Dundar, Y., ‘A systematic review of the research on communication between patients and health care professionals about medicines: the consequences for concordance’ Health Expectations 7(3): pp. 235-45, (2004).
‘The Human factor: How transforming healthcare to involve the public can save money and save lives’, NESTA (2010).
Garcia-Alamino, J.M., Ward, A.M., Alonso-Coello, P., Perera, R., Bankhead, C., Fitzmaurice, D., Heneghan, C.J., ‘Self-monitoring and self-management of oral anticoagulation’, Cochrane Database of Systematic Reviews, Issue 4 (2010).
19 One of the three future scenarios modelled in the report was a “fully engaged” scenario where patients and the public were more engaged in their health, contributing to significantly lower demands on the health service in the longer-term. Wanless, D., Securing our Future Health: Taking a Long-Term View, (2002).
20 Heisler, M., Bouknight, R.R., Hayward, R.A., Smith, D.M., Kerr, E.A., ‘The relative importance of physician communication, participatory decision-making, and patient understanding in diabetes self-management’ Journal of General Internal Medicine 17(4): pp.243-52, (2002).

Equity and excellent: liberating the NHS

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