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Health care pp

  1. 1. ViewpointHealthcare in a land called PeoplePower:nothing about me without meTom Delbanco MD1, Donald M. Berwick MD2, Jo Ivey Boufford MD3,S. Edgman-Levitan PA4, Gunter Ollenschlager MD5, Diane Plamping PhD6 È È 7and Richard G. Rockefeller MD1 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 AbstractCorrespondence In a 5-day retreat at a Salzburg Seminar attended by 64 individualsTom Delbanco from 29 countries, teams of health professionals, patient advocates,Harvard Medical SchoolBeth Israel Deaconess Medical Center artists, reporters and social scientists adopted the guiding principle330 Brookline Avenue, LY 310 of `nothing about me without me and created the country ofBoston PeoplePower. Designed to shift health care from `biomedicine toMA 02215USA `infomedicine, patients and health workers throughout People-E-mail: tdelbanc@caregroup. Power join in informed, shared decision-making and ance. Drawing, where possible, on computer-based guidance andAccepted for publication communication technologies, patients and clinicians contribute29 September 2000 actively to the patient record, transcripts of clinical encounters areKeywords: electronic medical records, shared, and patient education occurs primarily in the home, schoolemployee satisfaction, patient and community-based organizations. Patients and clinicians jointlysatisfaction, 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. 2. Healthcare in a land called PeoplePower, T Delbanco et al. 145 and creativity, the faculty charged the FellowsIntroduction with incorporating this principle into a newWorld-wide, health professionals scramble to health care system for a mythical republic calledimprove the quality of health care, focusing on PeoplePower. There, the new prime ministereverything from changing roles for a wide range swept into oce promising to design an entirelyof health workers, to new technologies, physical new health system through a joint e€ort by herplants, education for patients and professionals, lay and professional citizenry. She commissionedand the allocation of resources. These days, the Seminar participants to develop a `personalvirtually every health organization is knee-deep health care system for PeoplePower and, inin `redesign. Few, however, invite patients to order to stimulate creativity, she announced thatjoin in such e€orts. Consensus reached at a 1998 any discussion of `feasibility would be left forSalzburg Seminar entitled `Through the Patients another occasion.Eyes, suggests that e€orts to improve care might Working in small teams late into the night, thetake 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 federalpoint, we summarize recommendations that and local. For each initiative, we describe theemerged from intense debate and discussion principal recommendations that won consensusamong 64 individuals from 29 countries over the for the foundation of the new system. Re¯ectingcourse 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 consciouslyreconciliation, the Salzburg Seminar o€ers a `Utopian, re¯ecting hopes and aspirationsneutral forum in Salzburg, Austria, where indi- unleavened by the multitude of con¯icts andviduals from around the world express, challenge pressures that competitive, materialistic societiesand examine their beliefs and those of others on a engender.wide range of topics.1 The seven faculty for ourSeminar, active in clinical care, medical The clinician±patient relationshipeducation, health policy, community develop-ment, quality improvement, consumer advocacy Where technologically and ®nancially feasibleand 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 healthcommunities. The faculty and Fellows (whose care system. They serve not as a replacement formedian age was 40) represented nations as the clinician±patient relationship, but to enhancediverse as Australia, Argentina, China, it at every turn, while dramatically reducingRomania, Russia, Sweden, South Africa, Malta, human error. Electronic patient records provideIsrael, the United States and the United the backbone for decision support systems, asKingdom. They included physician assistants, well as a focal point for the clinician±patientpractitioners of alternative medicine, patient interaction. Patients and clinicians dependadvocates, health educators, doctors, healthcare heavily on secure electronic mail for communi-administrators, social scientists, nurses, philan- cation2 and a growing number of technologiesthropists, medical reporters, a storyteller and a help patients monitor symptoms and signs in thetheatre artist. home. Patients and their families use these tech- In the introductory group meeting the Fellows nologies also to monitor adherence to medicaldeveloped a guiding principle for patient/citizen regimens,3 pro®ting from reminders such asinvolvement: `Nothing about me without me, an electronic alerts and diaries.4 Higher level guid-emphatic statement that posed dicult chal- ance, including patient-speci®c disease manage-lenges for the weeks work. To foster imagination ment, preliminary diagnosis and triage forÓ Blackwell Science Ltd 2001 Health Expectations, 4, pp.144±150
  3. 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 clinicians oce. For educa- dont have to review their record if they dont 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 PeoplePowers 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 oces 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 clinicians addition, whether through face-to-face interview, oce 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 patients eyes, providing data that results of health maintenance and diagnostic guide clinicians in `real time towards improved testing.5 Bene®ting from PeoplePowers 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. 4. Healthcare in a land called PeoplePower, T Delbanco et al. 147he works to change his eating habits, increase his unique to each individuals personal circum-exercise, and adjust and adhere to his medical stance forces PeoplePower to consider activelyregimen. For her part, his doctor agrees to the issues of privacy, con®dentiality and consentchoose and send the patient relevant teaching for clinical research. PeoplePower is urging itsmaterials available on the Internet, to review and citizens to `donate their own Individual Healthrespond at least quarterly to the patients elec- Data Account voluntarily and anonymously totronic diary, and to meet with him three times the PeoplePower Data Banks. The Data Banksannually to monitor progress and address new store data that generate and track the variousissues. 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 thatrelative value of their speci®c goals enumerated houses standardized, core measures of thein advance. Incomplete achievements ± only processes and outcomes of care. Investigators2 kg of weight loss, or tardy responses by the draw on this invaluable source of data to conductclinician to a patients e-mail and telephone evidence-based, epidemiological research thatqueries ± yield lower scores. The goals the informs and improves care throughout the nationpatient and clinician establish include quanti- and beyond.®able measures that document change in Patients in PeoplePower may choose cliniciansfunctional status and quality of life. In addi- well-matched to their individual preferences bytion, errors and potentially preventable adverse reviewing taped statements o€ered by individualoutcomes a€ect the scores, as does the clinicians and some of their patients. The videospatients evaluation of speci®c elements of the describe attributes such as the clinicians back-clinicians behaviour, with particular emphasis ground, training, experience, practice style andon the recognition of individual dignity, pref- personal preferences. For each clinician, theerences and needs. If all goes perfectly during videos also display anecdotal and aggregatethe year, the patient and clinician each earn feedback from patients, along with scores100 points. outlining and analysing clinical performance. When viewed in the aggregate, the People- Finally, PeoplePower rewards all citizens forPower Quality Measurement and Improvement their contributions to the publics health bySystem addresses both the process and outcome providing rapid access not only to their medicalof care and re¯ects both patients and clinicians records, but also to summaries of their dataperformance. For example, in one 10 000-patient accounts, presented in ways that consider anpractice in PeoplePower, patients achieved last individuals literacy, education and culturalyear a mean Patient Quality Score of 63 out of a needs.`perfect 100. The practice and its patients havejointly established a target score of 70 for the Hospitals in PeoplePowercurrent year and together are elaborating strat-egies to achieve their goal. Similarly, for the 15 PeoplePower is experimenting with a system ofclinicians in the practice, last years mean Clini- accountability for patient advocates that mirrorscian Quality Score was 68. This year, helped by a one in place in several newspapers in the Unitedteam of patients, the clinicians are working hard States. As an example, the Boston Globeto improve care and have targeted a score of 80 ombudsman who critiques articles appearing inas their collective goal. that newspaper reports to the owner, not the editor. Similarly, ombudspeople in PeoplePower report to the ultimate hospital authority, beyondResearch, data management, and con®dentiality the chief executive or his or her delegates. FromPlacing the medical record front and centre and that prominent and protected vantage point, thedeveloping metrics to judge quality that are ombudspeople spearhead e€orts to improve careÓ Blackwell Science Ltd 2001 Health Expectations, 4, pp.144±150
  5. 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 ecient, 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 Powers `nothing about me without me guiding encourage `community-oriented primary care13 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. patients 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 PeoplePowers 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. 6. Healthcare in a land called PeoplePower, T Delbanco et al. 149professionals how to understand and draw upon service that delights and surprises both thethe patients perspective.14 Apprenticeship pro- `caregiver and `caregetter with unanticipatedgrammes deploy healthcare leaders as mentors to levels of excellence.16those demonstrating particular promise as future Led by the national government, PeoplePowerleaders. is establishing a `patient bill of rights, developed Peer counsellor programmes match patients in collaboratively by professionals and patients. Itneed with individuals with similar clinical moves beyond current e€orts, as the nationconditions and health needs. Individuals in local works to build consensus on complex issues suchhealthcare volunteer corps serve as `navigators, as priorities for organ transplantation, mentalassisting patients with the services of NGOs, health care, entitlements for the poor, genetichospitals and practices providing ambulatory engineering and therapies, and care at thecare. 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, atheir services for other community needs. Thus, national programme to inform and educate thefor those capable of participating, a service media has established guidelines for fairness andcredit `barter system, similar to the `time-dollar accuracy. National and local agencies assist andinitiatives emerging in some communities in the support the media in recruiting and retainingUnited States, encourages people from all walks experts skilled in interpreting research studiesof life to contribute to the PeoplePower health who teach reporters to evaluate new ®ndingssystem.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 encouragerequires a robust infrastructure. Helped by the the media to join in e€orts to improve the healthfederal government and private philanthropies, of the nation.communities throughout PeoplePower take the Finally, accountability for health and illnesslead in providing ®nancial support that builds in the nation sits at multiple levels, such thatvoluntary 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 isNational 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 `infomedicineadvocacy councils and include lay representa- becomes an equal partner with `biomedicine, alltives on their principal committees, working citizens of PeoplePower share accountability forgroups, 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 Summarylevel positions for individuals charged witharticulating and monitoring the patients We paint the components of PeoplePowersperspective. mythical health system with a broad, utopian National and local quality task forces contain brush, and the landscape that emerges di€ersa 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 systemsthat amplify and aggregate the individual quality around the world. It is a scenario divorcedcontracts and improvement initiatives outlined entirely from ®nancial, human, societal andabove. 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 runse€orts to improve care. The goal is a level of the risk of appearing cloying, simplistic andÓ Blackwell Science Ltd 2001 Health Expectations, 4, pp.144±150
  7. 7. 150 Healthcare in a land called PeoplePower, T Delbanco et al. beyond any possibility of approaching realiza- 3 Slack WV. Cybermedicine. How Computing Empowers tion. Yet, examples of many of the components Doctors and Patients for Better Health Care, 1st edn. San Francisco: Jossey-Bass, 1997. the Seminar envisioned exist, or are being 4 Rind DM, Davis R, Safran C. Designing studies developed somewhere today. The underlying of computer-based alerts and reminders. MD principles ± that of production, governance and Computing, 1995; 12: 122±126. accountability shared and created by patients 5 Neame R. Smart cards ± the key to trustworthy health working closely with health professionals ± information systems. British Medical Journal, 1997; engendered visions among the faculty and 314: 573. 6 Rind DM, Kohane IS, Szolovits P et al. Maintaining fellows that provoked animated debate well into the con®dentiality of medical records shared over the the night. At a time of frightening instability and Internet and the World Wide Web. Annals of Internal change in health systems world-wide, our hope is Medicine, 1997; 127: 138±141. that the readers of Health Expectations will be 7 Mandl KD, Katz SB, Kohane IS. Social equity and similarly stimulated to work towards health access to the World Wide Web and e-mail: implica- tions for design and implementation of medical programmes that draw closer together patients applications. Proceedings of the AMIA Annual Fall and those who care for them. 3 Symposium, 1998: 215±219. 8 Barzda L. A voluminous library for what ails you. New York Times, Connecticut Section, 1999; 4 July. Acknowledgements 9 Rockefeller R. Informed shared decision-making: is The authors thank the session Fellows and this the future of health care? Healthcare Forum Journal, 1999; 42: 54±56. observers for the insights and creativity that 10 Cleary PD, Edgman-Levitan S. Health care quality. engendered the body of this paper. Thanks also Incorporating consumer perspectives. Journal of the to Patty Russell BA for her assistance throughout American Medical Association, 1997; 278: the Seminar and thereafter in the preparation of 1608±1612. this manuscript, and to Erin Hartman MS for 11 Gerteis M, Edgman-Levitan E, Daley J, Delbanco TL. Through the Patients Eyes: Understanding and editorial assistance. Promoting Patient-Centered Care, 1st edn. San The Seminar was supported by contributions Francisco: Jossey-Bass, 1993. from the Robert Bosch Stiftung GmbH, the 12 Werdal L. Through the patients eyes. The Planetree Branta Foundation, Bure Health Care, The experience at Grif®n Hospital. Healthcare Forum Commonwealth Fund, Fairview Medical and Journal, 1995; 38: 35±38. the Fetzer Institute. 13 Mullan F. Sounding board. Community-oriented primary care: an agenda for the 80s. New England Journal of Medicine, 1982; 307: 1076±1078. 1 References 14 Delbanco TL. Enriching the doctor±patient relation- ship by inviting the patients perspective. Annals of 1 Ryback TW, Fox S, Ryback ML. The Salzburg Internal Medicine, 1992; 116: 414±418. Seminar: the First Fifty Years, 1st edn. Salzburg, 15 Cahn E, Rowe J. Time Dollars: The New Currency 2 Austria: The Salzburg Seminar in American Studies, That Enables Americans to Turn Their Hidden 1997. Resource ± Time ± Into Personal Security and 2 Kane B, Sands DZ. Guidelines for the clinical use of Community Renewal, 1st edn. Emmaus, Pennsylvania: electronic mail with patients. The AMIA Internet Rodale Press, 1992. Working Group, Task Force on Guidelines for the 16 Berwick DM. The total customer relationship in Use of Clinic-Patient Electronic Mail. Journal of the 4 health care: broadening the bandwidth. Jt Comm American Medical Information Association, 1998; 5: Journal of Quality Improvement, 1997; 23: 245±250. 104±111. Ó Blackwell Science Ltd 2001 Health Expectations, 4, pp.144±150