Patient Power as a Driver for Change: Reality or Rhetoric?
| Author | Jean Mossman,Mary G. Baker,Ingrid Kössler |
| DOI | http://doi.org/10.1111/1758-5899.12221 |
| Date | 01 March 2017 |
| Published date | 01 March 2017 |
Patient Power as a Driver for Change: Reality
or Rhetoric?
Jean Mossman
Policy Lead, European Brain Council, Brussels, Belgium
Mary G. Baker
President, European Year of the Brain, Brussels, Belgium
Ingrid K€
ossler
European Economic and Social Committee, Brussels, Belgium
Abstract
‘Patient-centred care’is a term often used in relation to health care policy and delivery, and it might be assumed that the
patient perspective is an integral part of the decisions made by policy makers and health care providers. It might also be
assumed that processes such as health technology assessments have mechanisms embedded in their methodology to faith-
fully capture what it means to live with an illness and the potential benefits (and risks) a new technology will bring to the
people likely to use it. Although there are many good reasons to involve patients in decisions –from the personal to the pol-
icy level –many issues must be resolved before health care truly delivers ‘nothing about me without me’to patients.
‘Nothing about me without me’has become the mantra of
a number of patient organisations and is widely used to
suggest that the patient is at the heart of health care deci-
sion making (Delbanco et al., 2001). And, in an era when
information on all aspects of health care is widely available,
the paternalistic model of health care –where the physician
alone decides what is best for the patient –is outdated. But
does the reality match the rhetoric?
Patient/public involvement is perceived by many as the
way to achieve patient-centred health care (although what
‘patient-centred’means is unclear). In Norway, for example,
the government is intent on incorporating patient experi-
ences and strengthening the role of patients in improving
the quality of care (Wiig et al., 2013). The National Health
Care Plans in Norway underline the role of patients as
experts in their own health, a concept that has grown in
popularity since Holman and Lorig (2000) wrote about
patients as partners in managing chronic disease. In The
Netherlands, the trend to involve patient organisations in
health care decision making is strong. Dutch patient organi-
sations are called the official ‘third party’in health care and
have become ‘insider groups’to such an extent that they
are regularly consulted by government (Van de Bovenkamp
and Trappenburg, 2011).
The independence of patient organisations
The issue of funding for patient organisations is a thorny one,
and from time to time it is scrutinised by the media. This is
important in deliberations about the role of patient organisa-
tions in influencing policy because the funding source is often
assumed to influence their views. Patient organisations are
criticised for receiving funding from the pharmaceutical
industry on the basis that this will influence their position
regarding access to a medicine. Arie and Mahony (2014),
while acknowledging that ‘most charities would campaign for
access to newly licensed drugs without corporate funding, on
the basis that their patients deserve to benefit from all
licensed drugs for their condition’, suggest that funding for
charities from industry ‘could be perceived as an almost
universal conflict of interest’. In the same article Ken Paterson,
past chair of the Scottish Medicines Consortium, suggests that
‘there may be some levels of subliminal influence’when
patients protest at decisions that prevent them gaining access
to a treatment that has been licensed as safe and effective.
It has been suggested that government funding for
patient organisations would remove the need for industry
funding but in a review of government funding for patient
organisations, Van de Bovenkamp and Trappenburg (2011)
found that government funding has resulted in quite sub-
stantial influence by government over patient organisations.
They argue that although the link with government allows
the patient organisations to play a role in health care policy
it can raise problems that should be addressed. In particular,
they note that too much governmental steering makes
patient organisations strategy followers rather than agenda
setters, and undermines the empowerment for which
patient organisations strive. Disappointingly, they add that
Global Policy (2017) 8:Suppl.2 doi: 10.1111/1758-5899.12221 ©2017 University of Durham and John Wiley & Sons, Ltd.
Global Policy Volume 8 . Supplement 2 . March 2017 133
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