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No decision about me without me

a return to the land called PeoplePower?1

Way Ahead 2011;15(2):1

We are all now familiar with the mantra 'No decision about me without me', oft quoted by Andrew Lansley, Secretary of State for Health, and central to the new plan for patient involvement in the NHS2. But it is worth taking a moment to consider the origin of this current catchphrase.

"Nothing about me without me" was the concept of a five day global seminar held in Saltzburg in 1998 to develop ideas for improving the quality of healthcare by involving patients. 64 participants from 23 different countries which included health professionals, patient advocates and social scientists created the land of 'PeoplePower' where patients and health professionals would facilitate informed shared decision making. They suggested that a shift from Biomedicine to Infomedicine was the way forward.

Shared decision making has the potential to improve health outcomes, improve patient satisfaction and to save costs. Evidence shows the advantages for patients living with long-term conditions of working in a partnership with their health professionals. Patients are recognised as experts in their own experience of the condition and their priorities are understood.

Glyn Elwyn3, primary care clinician and Director of Research at the Department of Primary Care and Public Health suggests that three conditions must be in place for shared decision making to become part of the mainstream:

  • ready access to evidence based information
  • guidance on how to weigh up the pros and cons of different options
  • a supportive clinical culture that facilitates patient engagement.

However Dr Angela Coulter4, Director of Global Initiatives at the Foundation for Informed Medical Decision Making, highlights that the availability of choice depends on the willingness of clinicians to offer it, with time, money, incentives and perhaps most importantly attitudes all acting as barriers to engagement. For people living with MS, involvement in shared decision making is key, both in terms of increasingly complex treatment choices and commissioning of services.

Today as we move into the new landscape of the NHS, the promise, or possibly aspiration, that "shared decision-making will become the norm"2 is as yet some way off. However this issue of Way Ahead features articles that support Elwyn's conditions above. Alice Hamilton explains how the Information Standard, supported by the Department of Health, provides the quality mark of assurance for people to identify quality, evidence based information that they can trust. Gail Townsend presents a web based toolkit to allow health professionals and people with MS to work in partnership to find the best way forward in the workplace and consider avenues for action together.

References

  1. Delbanco T, Berwick DM, Boufford JI, et al.
    Healthcare in a land called PeoplePower: nothing about me without me.
    Health Expect 2001;4(3):144-150.
    abstract
  2. Department of Health.
    Equity and excellence: liberating the NHS.
    London:Department of Health;2010.
    read online
  3. Elwyn G, Latimer S, Coulter A, et al.
    Implementing shared decision making in the NHS.
    BMJ 2010 Oct 14; 341:c5146.
  4. Coulter A.
    Do patients want a choice and does it work?
    BMJ 2010 Oct 14;341:c4989.