Session 553


In 1998, in a Salzburg Global session attended by 64 individuals from 29 countries, teams of health professionals, patient advocates, artists, storytellers, policy makers, representatives of the media, social scientists and other lay individuals created the country of PeoplePower, a nation whose health system was built "through the patients' eyes."

Central to this future projection of the individual patient-clinician relationship was an Internet-based patient record that "resides nowhere but is available everywhere. Patients are offered complete access to their medical record and urged also to...write in it - elaborating, tracking and explicating problems, correcting mistakes, prioritizing needs, and at times suggesting both diagnoses and treatment plans."

Health professionals, patients and lay people work to promote health and manage illness more successfully through both individual initiatives and public health measures. And today, self-care combined with team care and broad-based efforts at collaboration, within families and communities as well as between individuals and their clinicians, are gaining new currency and understanding.

To support such central goals and processes, how should one chart an individual's course through health and illness? In the future, could a transformation of the traditional medical record become a central part of an individual's management of health and illness? Could collaborative records, shaped both by clinicians and patients, become an integral part of the patient-clinician relationship? Could transformed, fully transparent records become central to the evolution of a true culture of health? How can that then be built on by communities, helping to shape the health care they want as well as need? And how can we ensure that these communities are made up of activated patients and citizens, sharing a culture of health with their clinicians?

Since that seminal Salzburg meeting in 1998, new approaches to medical records have spread rapidly. In the United States, millions of individuals now have access to records through secure electronic patient portals. In addition, spurred by the OpenNotes movement (, major health systems are now inviting patients to read and respond to notes written by their clinicians and other health providers. In many other parts of the world, similar practices are spreading - at times aided by evolving health information technologies, at others based primarily on hand-written communication. This both empowers individuals, enhances health equity and draws on the cultural resources of communities.

Participant Profile

Teams of four or five Fellows were selected from diverse countries. Each team drew from a cross-sectoral mix of health professionals, providers, policy makers, patients, commentators and journalists, and representatives of communities and voluntary organizations, who were leaders and change agents and demonstrated creativity and the ability to stretch traditional boundaries. 

Session Format and Key Questions

The five-day meeting was be highly participatory, with a strong focus on aggregating perspectives and experiences in order to create new approaches to developing and recording the journey through health and illness that every individual experiences.

Participants were supported by a panel of experts from a broad range of domains, including medical practitioners, the arts and humanities, the media, informatics, health policy and research.

Prior to arrival, the expert panel provided the Fellows with materials, so that each participant arrived with a firm grasp of fundamentals. The session established a "playful" atmosphere in which the teams worked to address the challenges articulated in PeoplePower. Along with work in country teams, plenaries and knowledge cafes, role plays mixed members from different country teams. Participants also used a mix of social media to enlist real-time participation by outside groups and individuals. Key questions addressed were:

  • If fully transparent communication becomes a foundation for the future patient-clinician relationship, how will medical practice evolve?
  • Can open medical records become central vehicles for engaging individuals actively in maintaining and restoring health, and in managing illness?
  • How may such change in practice enhance equity and transform care, particularly for those at the lower end of the socio-economic gradient, among ageing populations and those with chronic or serious advancing illness?
  • How can patients and families contribute to their care in ways that help clinicians to manage larger populations of patients effectively
  • How might patient safety and the processes, outcomes and costs of care improve?
  • How may fully transparent communication help informal caregivers whose family members and loved ones are increasingly dependent on their care?
  • How might transparency and co-creation of medical records help people become better stewards of their own health outside the clinical setting?
  • How might greater transparency promote community engagement in designing systems to deliver care both needed and wanted?

Program Goals

  • To equip teams of individuals from different nations with new insights and tools that will inform action plans and help them take leadership roles in their own countries as self-care and medical records continue to evolve and transform care;
  • To disseminate insights gained through widely read social media and publications that have the attention of a broad range of health professionals, patients and laypersons, including a series of papers to stimulate global progress in care.

Suggested Readings

For details regarding "OpenNotes", please visit

For "OpenNotes" Associated Publications, please visit:

Anderson, Margaret and K. Kimberly McCleary. “From passengers to co-pilots: Patient roles expand.” Science Translational Medicine 7(291), 2015.

Anderson, Margaret and K. Kimberly McCleary. “On the Path to a Science of Patient Input.” Science Translational Medicine 8(336), 2016.

Asch, David A. and Roy Rosin. “Engineering Social Incentives for Health.” N Engl J Med 375(26), 2016.

Delbanco Tom, and alii."Healthcare in a land called PeoplePower: nothing about me without me." Health Expectations, September 2001.

Desmond-Hellmann, Susan. “Toward Precision Medicine: A New Social Contract?” Science Translational Medicine 4(129), 2012.

Esch, Tobias, et al. “Engaging patients through open notes: an evaluation using mixed methods.” BMJ Open 6(1), 2016.

Hall, Mark A. and Kevin A. Schulman. “Ownership of medical information.” JAMA 301(12), 2009.

Hawgood, Sam. et al. “Precision medicine: Beyond the inflection point.” Science Translational Medicine 7(300), 2015.

Kish, Leonard J. and Eric J. Topol. “Unpatients-why patients Should own their medical data.” Nat Biotechnol 33(9), 2015.

Krumholz, Harlan M. “Informed Consent to Promote Patient-Centered Care.” JAMA 303(12), 2010.

Krumholz, Harlan M. “Seeing Through the Eyes of Patients: The Patient-Centered Outcomes Research Institute Funding Announcements.” Annals of Internal Medicine 157(6), 2012.

Krumholz, Harlan M. “Variations in Health Care, Patient Preferences, and High-Quality Decision Making.” JAMA 310(2), 2013.

Loewenstein, George. et al. “Incentives in Health: Different Prescriptions for Physicians and Patients.” JAMA 307(13), 2012.

Mandl, Kenneth D. and Issac S. Kohane. “Time for a Patient-Driven Health Information Economy?N Engl J Med 374(3), 2016.

Merchant, Raina M. et al. “Learning by Listening-Improving Health Care in the Era of Yelp.JAMA 316(23), 2016.

Richards, Tessa. "Listen to patients first." BMJ, 23 September, 2014.

Riggare, Sara. “Patients organise and train doctors to provide better care.” BMJ, 30 November, 2015. 

Selby, Joseph V. et al. “Network News: Powering Clinical Research.” Science Translational Medicine 5(182), 2013.

Snow Rosamund et al. “What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study.” BMJ Open, 2 November, 2014.

Spatz, Erica S. et al. “The New Era of Informed Consent: Getting to a Reasonable-Patient Standard Through Shared Decision Making.” JAMA 315(19), 2016.

Terry, Sharon F. and Bray Patrick-Lake. “Hearing voices: FDA seeks advice from patients” Science Translational Medicine 7(313), 2015.

Terry, Sharon F. and Patrick F. Terry. “Power to the People: Participant Ownership of Clinical Trial Data.” Science Translational Medicine 3(69), 2011.

Terry, Sharon F. “The Study is open: Participants are now recruiting investigators.” Science Translational Medicine 9(371), 2017.

Volpp, Kevin G. and David A. Asch. “Make the healthy choice the easy choice: unsing behavioral economics to advance a culture of health.” QJM, 2016.

Wilbanks, John T. and Eric J. Topol. “Stop the Privatization of Health Data.” Nature 535(7612), 2016.

Multi-Year Series


Salzburg Global Seminar has long been a leading forum for the exchange of ideas on issues in health and health care affecting countries throughout the world. At these meetings agendas have been re-set affecting policy and practice in crucial areas, such as patient safety and the engagement of patients in medical decision making. In 2010, Salzburg Global Seminar launched a multi-year series – Health and Health Care Innovation in the 21st Century – to crystallize new approaches to global health and health care in the face of emerging challenges affecting us now and set to continue on through the coming generation.

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