1. Viewpoint
Healthcare in a land called PeoplePower:
nothing about me without me
Tom Delbanco MD1, Donald M. Berwick MD2, Jo Ivey Boufford MD3,
S. Edgman-Levitan PA4, Gunter Ollenschlager MD5, Diane Plamping PhD6
È È
7
and Richard G. Rockefeller MD
1
Harvard Medical School, Beth Israel Deaconess Medical Center, Boston, USA, 2Institute for Healthcare Improvement,
Boston, USA, 3Robert F. Wagner School of Public Service, New York University, New York, USA, 4The Picker Institute,
Boston, USA, 5Agency for Quality in Medicine, Cologne, Germany, 6Tower Hamlets Community Healthcare NHS Trust,
Mile End Hospital, London, UK, 7Health Commons Institute, Falmouth, ME, US
Abstract
Correspondence In a 5-day retreat at a Salzburg Seminar attended by 64 individuals
Tom Delbanco
from 29 countries, teams of health professionals, patient advocates,
Harvard Medical School
Beth Israel Deaconess Medical Center artists, reporters and social scientists adopted the guiding principle
330 Brookline Avenue, LY 310 of `nothing about me without me' and created the country of
Boston PeoplePower. Designed to shift health care from `biomedicine' to
MA 02215
USA `infomedicine', patients and health workers throughout People-
E-mail: tdelbanc@caregroup. Power join in informed, shared decision-making and govern-
harvard.edu ance. Drawing, where possible, on computer-based guidance and
Accepted for publication communication technologies, patients and clinicians contribute
29 September 2000 actively to the patient record, transcripts of clinical encounters are
Keywords: electronic medical records, shared, and patient education occurs primarily in the home, school
employee satisfaction, patient
and community-based organizations. Patients and clinicians jointly
satisfaction, shared decision-making,
volunteerism develop individual `quality contracts', serving as building blocks for
quality measurement and improvement systems that aggregate data,
while re¯ecting unique attributes of individual patients and clini-
cians. Patients donate process and outcome data to national data
banks that fuel epidemiological research and evidence-based
improvement systems. In PeoplePower hospitals, constant patient
and employee feedback informs quality improvement work teams of
patients and health professionals. Volunteers work actively in all
units, patient rooms are information centres that transform their
shape and decor as needs and individual preferences dictate, and arts
and humanities programmes nourish the spirit. In the community,
from the earliest school days the citizenry works with health
professionals to adopt responsible health behaviours. Communities
join in selecting and educating health professionals and barter
systems improve access to care. Finally, lay individuals partner with
professionals on all local, regional and national governmental and
private health agencies.
144 Ó Blackwell Science Ltd 2001 Health Expectations, 4, pp.144±150
2. Healthcare in a land called PeoplePower, T Delbanco et al. 145
and creativity, the faculty charged the Fellows
Introduction
with incorporating this principle into a new
World-wide, health professionals scramble to health care system for a mythical republic called
improve the quality of health care, focusing on PeoplePower. There, the new prime minister
everything from changing roles for a wide range swept into oce promising to design an entirely
of health workers, to new technologies, physical new health system through a joint e€ort by her
plants, education for patients and professionals, lay and professional citizenry. She commissioned
and the allocation of resources. These days, the Seminar participants to develop a `personal
virtually every health organization is knee-deep health care system for PeoplePower' and, in
in `redesign'. Few, however, invite patients to order to stimulate creativity, she announced that
join in such e€orts. Consensus reached at a 1998 any discussion of `feasibility' would be left for
Salzburg Seminar entitled `Through the Patient's another occasion.
Eyes', suggests that e€orts to improve care might Working in small teams late into the night, the
take strikingly di€erent shape if patients worked Fellows elaborated initiatives involving indi-
as full partners with health professionals to vidual patients and clinicians, hospitals,
design and implement change. To illustrate this communities and the government, both federal
point, we summarize recommendations that and local. For each initiative, we describe the
emerged from intense debate and discussion principal recommendations that won consensus
among 64 individuals from 29 countries over the for the foundation of the new system. Re¯ecting
course of 5 days. our shared aspirations, we describe PeoplePower
Founded in 1947 in the spirit of post-war as if it exists. Indeed, what follows is consciously
reconciliation, the Salzburg Seminar o€ers a `Utopian', re¯ecting hopes and aspirations
neutral forum in Salzburg, Austria, where indi- unleavened by the multitude of con¯icts and
viduals from around the world express, challenge pressures that competitive, materialistic societies
and examine their beliefs and those of others on a engender.
wide range of topics.1 The seven faculty for our
Seminar, active in clinical care, medical
The clinician±patient relationship
education, health policy, community develop-
ment, quality improvement, consumer advocacy Where technologically and ®nancially feasible
and shared decision-making, facilitated the within the widely varying regions of People-
work of 57 Fellows nominated and sponsored Power, computer-based guidance and commu-
by national and local agencies, practices or nication systems are central to the new health
communities. The faculty and Fellows (whose care system. They serve not as a replacement for
median age was 40) represented nations as the clinician±patient relationship, but to enhance
diverse as Australia, Argentina, China, it at every turn, while dramatically reducing
Romania, Russia, Sweden, South Africa, Malta, human error. Electronic patient records provide
Israel, the United States and the United the backbone for decision support systems, as
Kingdom. They included physician assistants, well as a focal point for the clinician±patient
practitioners of alternative medicine, patient interaction. Patients and clinicians depend
advocates, health educators, doctors, healthcare heavily on secure electronic mail for communi-
administrators, social scientists, nurses, philan- cation2 and a growing number of technologies
thropists, medical reporters, a storyteller and a help patients monitor symptoms and signs in the
theatre artist. home. Patients and their families use these tech-
In the introductory group meeting the Fellows nologies also to monitor adherence to medical
developed a guiding principle for patient/citizen regimens,3 pro®ting from reminders such as
involvement: `Nothing about me without me', an electronic alerts and diaries.4 Higher level guid-
emphatic statement that posed dicult chal- ance, including patient-speci®c disease manage-
lenges for the week's work. To foster imagination ment, preliminary diagnosis and triage for
Ó Blackwell Science Ltd 2001 Health Expectations, 4, pp.144±150
3. 146 Healthcare in a land called PeoplePower, T Delbanco et al.
patients at home, and even higher-level diag- Community-based teams of lay persons and
nostic assistance for patients and doctors toge- health professionals monitor and recommend
ther, are increasingly employed and continuously interactive material from selected Internet sites,
improved. which complements and ampli®es the clinical
issue at hand.
Citizens from areas in PeoplePower lacking
Medical records and patient education
resources for such technologies subscribe
In PeoplePower, the Internet-based patient enthusiastically to the same underlying princi-
record exists as a single version that resides ples7 but rely on paper and pencil and, when
nowhere but is available everywhere. Oversight possible, the telephone to communicate. In these
by many users has greatly improved its reliab- parts of the nation, family members, volunteers
ility. Not only do patients have nearly complete or small audio or video recorders document
access to their medical record (although they interactions in the clinician's oce. For educa-
don't have to review their record if they don't tional material, patients and clinicians draw
want to), but they also write in it ± elaborating, regularly on libraries of books, articles and tapes
tracking and explicating problems, correcting focused on health promotion and the manage-
mistakes, prioritizing needs, and at times sug- ment of illness.8 Peer counselling for those who
gesting both diagnoses and treatment plans. are not literate plays an important role in elab-
Controlled layering of access provides far orating informed, shared decision-making,
greater con®dentiality than was previously which represents PeoplePower's national stan-
possible. Some parts of the record are for dard for clinical interaction.9
patients' eyes only. Others, such as clinicians'
reminders to themselves, are o€ limits to anyone
Clinicians and patients measuring
else, while employers, payers, etc., are privy only
and improving quality
to information authorized for their speci®c
purposes. Whichever technology they use, after patients
In clinicians' oces throughout PeoplePower, and their families re¯ect on and, when possible,
computerized voice recognition systems record review transcripts of the visit, health providers
encounters in real time, allowing patients to go expect to receive anecdotal feedback, sent
home with a hard copy of the visit to review at through secure e-mail systems when feasible. In
leisure thereafter. Others leave the clinician's addition, whether through face-to-face interview,
oce with a transcript recorded on a `smart paper and pencil, telephone, or with computer-
card', a machine-readable computerized storage assisted technologies, virtually all patients
system that holds also their medical histories, complete structured surveys that assess quality
prior visit transcripts, medication lists and `through the patient's eyes', providing data that
results of health maintenance and diagnostic guide clinicians in `real time' towards improved
testing.5 Bene®ting from PeoplePower's national care.10,11
obsession with secure and private communica- In PeoplePower, each citizen also owns an
tion lines6 still other patients access and shape individual `quality contract', agreed to and
their medical records via the World Wide Web, monitored by both the patient and clinician. As
o€ering their clinicians access to information an example, consider a middle-aged obese,
that the patients, and sometimes their families, hypertensive and diabetic man. He and his
elaborate and update regularly. doctor jointly design a programme to manage his
In PeoplePower, most patient education does care and together establish explicit, measurable
not take place during the actual patient±clinician goals for the year. The patient decides to lose
encounter. Rather, much occurs before and after 10 kg of weight, decrease his elevated glycoso-
visits to clinicians, with patient-speci®c materials lated haemoglobin level by 2%, and bring down
¯owing by e-mail from the clinician to patient. his mean diastolic pressure by 15 mm. To do this
Ó Blackwell Science Ltd 2001 Health Expectations, 4, pp.144±150
4. Healthcare in a land called PeoplePower, T Delbanco et al. 147
he works to change his eating habits, increase his unique to each individual's personal circum-
exercise, and adjust and adhere to his medical stance forces PeoplePower to consider actively
regimen. For her part, his doctor agrees to the issues of privacy, con®dentiality and consent
choose and send the patient relevant teaching for clinical research. PeoplePower is urging its
materials available on the Internet, to review and citizens to `donate' their own Individual Health
respond at least quarterly to the patient's elec- Data Account voluntarily and anonymously to
tronic diary, and to meet with him three times the PeoplePower Data Banks. The Data Banks
annually to monitor progress and address new store data that generate and track the various
issues. scores outlined above. They also a€ord the
Both the patient and clinician measure and country unique opportunities to aggregate data,
score performance and outcome, with the establishing a `virtual' national laboratory that
relative value of their speci®c goals enumerated houses standardized, core measures of the
in advance. Incomplete achievements ± only processes and outcomes of care. Investigators
2 kg of weight loss, or tardy responses by the draw on this invaluable source of data to conduct
clinician to a patient's e-mail and telephone evidence-based, epidemiological research that
queries ± yield lower scores. The goals the informs and improves care throughout the nation
patient and clinician establish include quanti- and beyond.
®able measures that document change in Patients in PeoplePower may choose clinicians
functional status and quality of life. In addi- well-matched to their individual preferences by
tion, errors and potentially preventable adverse reviewing taped statements o€ered by individual
outcomes a€ect the scores, as does the clinicians and some of their patients. The videos
patient's evaluation of speci®c elements of the describe attributes such as the clinician's back-
clinician's behaviour, with particular emphasis ground, training, experience, practice style and
on the recognition of individual dignity, pref- personal preferences. For each clinician, the
erences and needs. If all goes perfectly during videos also display anecdotal and aggregate
the year, the patient and clinician each earn feedback from patients, along with scores
100 points. outlining and analysing clinical performance.
When viewed in the aggregate, the People- Finally, PeoplePower rewards all citizens for
Power Quality Measurement and Improvement their contributions to the public's health by
System addresses both the process and outcome providing rapid access not only to their medical
of care and re¯ects both patients' and clinicians' records, but also to summaries of their data
performance. For example, in one 10 000-patient accounts, presented in ways that consider an
practice in PeoplePower, patients achieved last individual's literacy, education and cultural
year a mean Patient Quality Score of 63 out of a needs.
`perfect' 100. The practice and its patients have
jointly established a target score of 70 for the
Hospitals in PeoplePower
current year and together are elaborating strat-
egies to achieve their goal. Similarly, for the 15 PeoplePower is experimenting with a system of
clinicians in the practice, last year's mean Clini- accountability for patient advocates that mirrors
cian Quality Score was 68. This year, helped by a one in place in several newspapers in the United
team of patients, the clinicians are working hard States. As an example, the Boston Globe
to improve care and have targeted a score of 80 ombudsman who critiques articles appearing in
as their collective goal. that newspaper reports to the owner, not the
editor. Similarly, ombudspeople in PeoplePower
report to the ultimate hospital authority, beyond
Research, data management, and con®dentiality
the chief executive or his or her delegates. From
Placing the medical record front and centre and that prominent and protected vantage point, the
developing metrics to judge quality that are ombudspeople spearhead e€orts to improve care
Ó Blackwell Science Ltd 2001 Health Expectations, 4, pp.144±150
5. 148 Healthcare in a land called PeoplePower, T Delbanco et al.
by scrutinizing untoward patient experiences (NGOs) representing the categorical interests of
and advocating timely remedies. both healthy and ill individuals. Further promo-
Collaborating with social scientists, the ting a mix of professional and lay skills, the
ombudspeople also join teams of hospital hospitals house associations focusing on
workers who generate from patients and their diabetes, cancer, care at the end of life, parent
families a constant stream of feedback, both counselling or addiction. Hospital-based learning
through surveys designed to provide aggregate centres and libraries, similar to those pioneered
data and by inviting individual anecdotes. by Planetree in the United States,12 take a
Guided by the principle that an ecient, ener- central role in convening and networking patients
gized and satis®ed workforce provides the best and their families and friends. The centres work
care, the ombudspeople and social scientists closely with storytellers who both perform for
gather similar information from the hospital patients and elicit patients' stories, artists and
workforce, including professionals and those performers from a wide range of disciplines,
in supporting roles, using surveys that measure spiritual leaders from the community, and healers
workers' experiences in carrying out their from a broad spectrum of disciplines that
responsibilities and also evaluate job satisfaction. complement allopathic medicine.
On PeoplePower hospital ¯oors, families help
not only their loved ones, but also volunteer to
Community-based initiatives
aid many patients in the hospital. Similarly,
patients join in a wide variety of hospital e€orts, In communities throughout PeoplePower,
ranging from ad hoc work teams developing new primary care clinicians serve as `gateopeners', in
initiatives, to the array of committees overseeing striking contrast to their former role as `gate-
di€erent hospital functions. Such patient parti- keepers'. Community leaders work closely with
cipation provides further substance to People- health professionals and their students to
Power's `nothing about me without me' guiding encourage `community-oriented primary care'13
principle. that actively engages primary and secondary
With respect to hospitals and their physical schools, religious institutions, local businesses,
design, PeoplePower recognizes that individual the police force and prisons. In the elementary
preferences concerning privacy vs. group living schools in PeoplePower, health professionals
vary widely. Much like the stage in a theatre, the join teachers in preparing students from their
nation is building hospitals that house rooms of very ®rst days to take steps to maximize their
changeable shapes and sizes, thereby helping own health and to learn to deal with illness in a
sta€ and patients adapt to shifting usage and way that promotes informed, shared decisions
preferences. Where resources permit, each room between themselves and those who care for
holds an information centre, including the them.
patient's electronic medical record, a computer Lay citizens and clinicians join in educational
providing Internet access, CD ROMs o€ering initiatives designed to improve clinical, spiritual
education about disease and the processes of and managerial skills among health professionals
care, and recording and playback devices that and lay individuals involved in health care.
allow patients and families to review important Acknowledging PeoplePower's national interest
discussions with caregivers. Volunteers help `low in developing health professionals with cultural
tech' patients work with these technologies. and ethnic backgrounds similar to those they will
Wherever feasible, hospitals in PeoplePower serve, community representatives help identify
bring natural light to the patients and workforce, candidates suitable for careers in health care and
gardens are abundant, pet animals are welcomed, join in the selection process for new health
and there is a sense of campus, rather than prison. professionals. Holding formal teaching appoint-
Hospitals support patients further by alloca- ments in health profession schools, both
ting space to non-governmental organizations healthy and ill lay persons teach young health
Ó Blackwell Science Ltd 2001 Health Expectations, 4, pp.144±150
6. Healthcare in a land called PeoplePower, T Delbanco et al. 149
professionals how to understand and draw upon service that delights and surprises both the
the patient's perspective.14 Apprenticeship pro- `caregiver' and `caregetter' with unanticipated
grammes deploy healthcare leaders as mentors to levels of excellence.16
those demonstrating particular promise as future Led by the national government, PeoplePower
leaders. is establishing a `patient bill of rights', developed
Peer counsellor programmes match patients in collaboratively by professionals and patients. It
need with individuals with similar clinical moves beyond current e€orts, as the nation
conditions and health needs. Individuals in local works to build consensus on complex issues such
healthcare volunteer corps serve as `navigators', as priorities for organ transplantation, mental
assisting patients with the services of NGOs, health care, entitlements for the poor, genetic
hospitals and practices providing ambulatory engineering and therapies, and care at the
care. Those helped by such e€orts are expected, beginning and end of life.
when possible, to reciprocate by volunteering In an e€ort to hold the media accountable, a
their services for other community needs. Thus, national programme to inform and educate the
for those capable of participating, a service media has established guidelines for fairness and
credit `barter system', similar to the `time-dollar' accuracy. National and local agencies assist and
initiatives emerging in some communities in the support the media in recruiting and retaining
United States, encourages people from all walks experts skilled in interpreting research studies
of life to contribute to the PeoplePower health who teach reporters to evaluate new ®ndings
system.15 critically. PeoplePower has also established
While much of the foregoing draws on incentives, including national and local `health-
voluntarism and reciprocity, such a system care media award programmes', that encourage
requires a robust infrastructure. Helped by the the media to join in e€orts to improve the health
federal government and private philanthropies, of the nation.
communities throughout PeoplePower take the Finally, accountability for health and illness
lead in providing ®nancial support that builds in the nation sits at multiple levels, such that
voluntary e€orts into the fabric of the nation. every citizen is growing con®dent that `nothing
about me without me' is embedded in all levels
of the delivery system. Accountability is
National and local governmental agencies
becoming transparent, functioning upward,
In PeoplePower, those who legislate, regulate downward and horizontally, with quality meas-
and pay for health care work closely with patient ured at every juncture. Indeed, as `infomedicine'
advocacy councils and include lay representa- becomes an equal partner with `biomedicine', all
tives on their principal committees, working citizens of PeoplePower share accountability for
groups, review boards and consensus panels. the quality of the new health system.
Similarly, the ministries of health and corres-
ponding local agencies have established high
Summary
level positions for individuals charged with
articulating and monitoring the patient's We paint the components of PeoplePower's
perspective. mythical health system with a broad, utopian
National and local quality task forces contain brush, and the landscape that emerges di€ers
a mix of health professionals and lay individuals. strikingly from the strategies, shape and philo-
They establish and monitor quality standards sophy of care deployed today in health systems
that amplify and aggregate the individual quality around the world. It is a scenario divorced
contracts and improvement initiatives outlined entirely from ®nancial, human, societal and
above. They work aggressively to identify historical constraints, and as such is suspect, can
`benchmarks' and `best practices' that stimulate never be realized in its entirety, and indeed runs
e€orts to improve care. The goal is a level of the risk of appearing cloying, simplistic and
Ó Blackwell Science Ltd 2001 Health Expectations, 4, pp.144±150
7. 150 Healthcare in a land called PeoplePower, T Delbanco et al.
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Ó Blackwell Science Ltd 2001 Health Expectations, 4, pp.144±150
