but is this compatible with the demand for easier and
faster access—for example, via the government’s new
As O’Connor et al’s systematic review of decision
aids shows, patients do not necessarily make conserva-
tive choices when they are fully informed about the
risks and benefits of treatment options (p 731).15In the
end the government may be disappointed if demand
continues to rise despite its efforts to empower
patients—but they should not be. If it increases the
chance of patients being treated like grown ups, it will
have been worth it.
Angela Coulter executive director,policy and development
King’s Fund, London W1M 0AN
1Balint M. The doctor, his patient and the illness. London: Tavistock Publica-
Tudor Hart J. A new kind of doctor. London: Merlin Press, 1988.
Wennberg J E. Dealing with medical practice variations: a proposal for
action. Health Affairs 1984;3:6-32.
4Pencheon D. Matching demand and supply fairly and efficiently. BMJ
Secretary of State for Health. Saving lives: our healthier nation. London:
Stationery Office, 1999 (Cm 4386).
Guadagnoli E, Ward P. Patient participation in decision-making. Soc Sci
Richards M A, Ramirez A J, Degner L F, Fallowfield L J, Maher E J,
Neuberger J. Offering choice of treatment to patients with cancers. Eur J
Coulter A, Peto V, Doll H. Patients’ preferences and general practitioners’
decisions in treatment of menstrual disorders. Fam Pract 1994;11:67-74.
Charles C, Redko C, Whelan T, Gafni A, Reyno L. Doing nothing is no
choice: lay constructions of treatment decision-making among women
with early-stage breast cancer. Sociol Health and Illness 1998;20:71-95.
10 General Medical Council. Seeking patients’consent:the ethical considerations.
London: GMC, 1999.
11 Elwyn G, Edwards A, Gwyn R, Grol R. Towards a feasible model for
shared decision-making: perceptions and reactions of registrars in
general practice. BMJ 1999;319:753-6.
12 Towle A, Godolphin W. Framework for teaching and learning informed
shared decision making. BMJ 1999;319:766-71.
13 Shepperd S, Charnock D, Gann B. Helping patients access high quality
health information. BMJ 1999;319:764-6.
14 Howie J G R, Heaney D J, Maxwell M, Walker J J, Freeman G K, Rai H.
Quality at general practice consultations: cross sectional survey. BMJ
15 O’Connor A M, Rostom A, Fiset V, Tetroe J, Entwistle V, Llewellyn-
Thomas H, et al. Decision aids for patients facing health treatment
or screening decisions: systematic review. BMJ 1999;319:731-4.
The increasing importance of patient surveys
Now that sound methods exist,patient surveys can facilitate improvement
they are not happy with or they can voice their
opinions in an attempt to change care. A common
strategy for eliciting patients’ “voices” is to conduct sur-
veys. Clinicians have long been sceptical about such
surveys, partly because they communicate regularly
with their patients and saw no need for another
method of hearing their concerns and partly because
satisfaction surveys used to be flawed measures of
healthcare quality. Now, however, that is beginning to
change as rigorous methods have been applied to
developing and evaluating patient surveys.
Despite numerous studies of patient satisfaction,2
they have not resulted in the quality improvement that
many expected. Previous satisfaction surveys had little
impact because they often did not meet minimal
standards of conceptual or methodological rigour and
were not designed to facilitate quality improvement
efforts. Responses to such surveys are subjective and
difficult to interpret since they are a complex function
of expectations that may vary greatly among patients
with comparable care. Moreover, the questionnaires
assessed things, such as quality of the food, that have
little bearing on the quality of clinical care,and thus the
results provided little direction to those responsible for
improving care processes.3 4
It is now widely recognised that there is a need for
rigorous methods, other than clinical conversations, to
elicit patients’ views on such matters as treatment deci-
sions and the quality of care received.5 6Much effort
has therefore been devoted to developing and evaluat-
ing survey measures that elicit reports about specific
care experiences that reflect quality of care, not ameni-
ties.7 8Such questions are less subjective and less influ-
enced by patient characteristics, are more interpret-
eople often think of “exit” and “voice” as the
main ways patients can influence healthcare
quality1—that is, patients can leave providers
The Picker Institute has developed and used such
instruments to evaluate the quality of hospital care in
the United States7and more recently, in Europe. The
Consumer Assessment of Health Plans (CAHPS)
project has adopted a similar approach for ambulatory
care in the United States.10These newer instruments
provide qualitatively better data than many earlier sur-
veys,and the response of patients,clinicians,and others
responsible for the quality of health care has been
striking. One indication of the value of such surveys is
the increasing public dissemination of the resulting
data. CAHPS data were available to about 90 million
Americans in 1999, including 39 million Medicare
default.asp), 9 million federal employees, 40 million
people covered by plans reporting to the National
Committee for Quality Assurance, and people in plans
surveyed by other sponsors.11
Regional coalitions are also increasingly coordinat-
ing data collection and dissemination.A partnership of
Massachusetts healthcare, business, and government
leaders recognised the need for credible, publicly avail-
able data on the quality of hospital care in the state and
launched a voluntary effort to collect information
discharged from over 50 Massachusetts hospitals.12
Those data were used to create a report that was
distributed to the hospitals and made publicly available
after an initial cycle of internal reporting (http://
www.mhqp.org/statewidesurvey.html). A testament to
the quality and focus of the project is the fact that par-
ticipants agreed at the outset to use the data not to
judge “winners and losers” but to educate and inform
hospitals and consumers and to focus and facilitate
quality improvement efforts.The news media generally
andthus maybe acted onforquality
BMJ VOLUME 31918 SEPTEMBER 1999 www.bmj.com
recognised that the important story was not that some
hospitals were better than others, but that all hospitals
were working collaboratively to respond to patients’
concerns. Clinicians and administrators embraced the
new measures as valid and important and devoted new
energy to making the care of patients better, rather
than criticising the message. The report stimulated
numerous quality improvement activities. A similar
project is under way in California with a substantially
larger group of hospitals.
What are the most important lessons for clinicians
from these activities? Firstly, put aside preconceptions
about the value of patient surveys: there now are valid
and reliable instruments that ask patients objective
questions about aspects of care that both clinicians and
patients think represent quality. Secondly, newer
surveys and reports can provide results that are
interpretable and suggest specific areas for quality
improvement efforts. Thirdly, we should not worry
about whether or not to release information on quality
to the public and whether that impedes quality
improvement. Public reporting is an inexorable trend,
so our efforts should be directed to making sure that
these reports contain reliable and valid indicators of
quality and that their focus is not on identifying “bad
apples” but on stimulating and guiding quality
improvement efforts. Patients would much rather their
voices be heard than exit out of frustration. Now that
we have the right tools we should all work together to
hear patients’ voices clearly and meet their needs
Paul D Cleary professor
Department of Health Care Policy, Harvard Medical School, Boston
MA, 02115, USA (firstname.lastname@example.org)
PC was formerly an unpaid officer and is now an unpaid adviser
to the Picker Institute.
1 Hirshman A. Exit,voice,and loyalty. Cambridge: Harvard University Press,
Cleary PD, McNeil BJ. Patient satisfaction as an indicator of quality care.
Williams B. Patient satisfaction: a valid concept? Soc Sci Med 1994;38:509-
Cleary PD.Satisfaction may not suffice:a commentary on “a patient’s per-
spective.” Int J Technol Assess Health Care 1998;14:35-7.
Fitzpatrick R. Surveys of patient satisfaction: I—Important general
considerations. BMJ 1991;302:887-9.
Cleary PD, Edgman-Levitan S. Health care quality. Incorporating
consumer perspectives. JAMA 1997;278:1608-12.
Cleary PD, Edgman-Levitan S, Roberts M, Moloney TW, McMullen W,
Walker JD, et al. Patients evaluate their hospital care: a national survey.
Health Affairs 1991;10:254-67.
Edgman-Levitan S,Cleary PD.What information do consumers want and
need? Health Affairs 1996;15:42-56.
Cleary PD, Edgman-Levitan S, Walker JD, Gerteis M, Delbanco TL. Using
patient reports to improve medical care: a preliminary report from 10
hospitals. Quality Management in Health Care 1993;2:31-8.
10 Hays RD, Shaul JA, Williams VSL, Lubalin JS, Harris-Kojetin LD, Sweeny
SF, et al. Psychometric properties of the CAHPS 1.0 survey measures.
Med Care 1999;37(suppl):MS22-31.
11 Veroff DR,Gallagher PM,Wilson V,Uyeda M,Merselis J,Guadagnoli E,et
al. Effective reports for health care quality data: lessons from a CAHPS
demonstration in Washington State. Int J Qual Hlth Care (in press).
12 Rogers G, Smith D. Reporting comparative results from hospital patient
surveys. Int J Qual Health Care 1999;11:251-9.
The challenge of lay partnership
It provides a different view of the world
been involved at the heart of professional practice and
performance, working with doctors in doctor-patient
groups discussing standards and guidelines, audit and
revalidation. This involvement challenges doctors’
belief that they can decide by themselves what patients’
interests are and how they should be met. Yet when
they accept this challenge and work with lay people as
equals the scene is set for productive work.
For such partnership to work well we must be clear
what “lay” means. Doctors share core values, norms, and
skills but specialise in various ways and to different levels.
Parallels among lay people are less well understood.
Some lay people, usually after being a patient, develop
expertise in the experiences, perceptions, and interests
of patients as patients define them.These,not “ordinary”
lay people, are the ones who should take part in doctor-
patient groups. Among them, too, are variations in
detail of their own experiences of health care.They can-
not usually speak for other patients, partly because they
seldom know what their views are, partly because their
analyses are confined to their own experience. Patient
groups’ expertise lies in their detailed knowledge of
issues that are of concern to particular groups of
patients—as in maternity care. They may disagree
among themselves about solutions, but their identifica-
ay people have long been involved in the health
service as members of governance bodies and
other committees. But only recently have they
tion of the issues is important.Patient advocates’skill lies
in their ability to apply to any specific issue or situation
the principles that protect patients’ interests. But they
may need those issues to be identified first by patients or
These categories overlap, and much depends on
individuals’ ability to capture the essence of experi-
ence and generalise from that. Nevertheless, the
categories bear on the selection of members for
doctor-patient groups. Most groups need a mix of lay
members with different skills,just as they need doctors
with different skills. The exact mix depends on the
purpose and level of the group.1Thus cancer patients
and cancer support group members join with health
professionals in local liaison groups to discuss local
standards of care.2Patient liaison groups at national
level discussing national standards usually include
patient group members and patient advocates. The
patient liaison group of the Royal College of Patholo-
gists, for example, has a cancer support group
member, a community health council member, the
chair of a research ethics committee, the chair of a
consumer group concerned with ethics in research, an
adviser at a citizen’s advice bureau, and a consultant to
the World Health Organisation’s international drug
differences of view among and between the lay
members and the doctor members can be explored in
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