Health » Overview

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 of seminars 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.


Interviews and coverage from our Health programs

Technology in the patients' hands
Technology in the patients' hands
Oscar Tollast 
Developments in technology afford new methods of treatment, new methods of recording data, and new methods to share information with more people than ever before. With that in mind, participants at Salzburg Global’s session on Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship, have been asking themselves how this technology can be better used. Technology can be used to empower patients, physicians and other health professionals. The question is how to make this technology work for all invested parties in the patient-clinician relationship. In the past few days at Schloss Leopoldskron, participants have considered how patients have recorded their medical data as a form of empowerment, and as a method of seeking positive change through better treatment. They’ve also heard from speakers who have looked at the relationship between technology and transparency. These talks have been designed to enable fruitful thinking as to how create and enable new ways of recording a patient’s journey. Make health care easy On Monday morning, participants heard about what could occur if the right tools were placed in the right hands. The speaker behind the talk outlined the future of health lies in the optimum use of technology for primary health. In his presentation, he promoted the view that a multidisciplinary expertise could enable a comprehensive understanding of the needs of the health care system. After describing health care as “one of the most stress inducing topics,” the speaker highlighted work taking place in India to make the patient treatment workflow better. He cited work taking place at Mohalla Clinics. In between April and December 2016, 110 clinics in Delhi treated 1.5 million people. The clinics are praised for treating minor ailments outside hospitals, which in turn free up doctors to focus on complicated diseases and surgeries. The speaker said these clinics provided a paperless clinic workflow, where the average time for patients end to end hovered around four minutes. Participants heard the clinics were easy to use, accessible, instant, and patients were co-designers of health. The clinic is an example of a greater push in how the future of primary health care can be reimagined. The speaker suggested there was existing technology in place which could be used to a better advantage. He said, “It’s time for us to reformulate the role of the local clinic.” Ending his presentation, he outlined four points: make health care easy; share data but have mediators to help patients understand it; get data automatically; and address human needs through community contact, as well as personal contact. In response to this presentation, one participant outlined activities which were already in practice in the US. In one area, something similar to DNA biobanking is taking place except the data being used is people’s past and present social media posts. Around 5,000 patients have agreed to this, which allows them to “passively” contribute to their medical records just by going about their day-to-day lives. The participant said that because personal behaviors are digital and more accessible, patient engagement now means something entirely different. Good over evil This talk was followed by a presentation on learning from patients. Prior to starting, the speaker said the theme of the conference was “good over evil.” He highlighted presentations participants had heard from on Sunday to highlight the role of the patient. The end game is improving the way people work together, respect and honor, and the use of technology. As much as people want a good relationship with their clinician, the speaker said they would also like effective treatment and to be in a better situation. The speaker referred to the “kingdom of research,” a land where “subjects” exist under the rule of a sovereign (researcher). In scenarios like this, the subject often doesn’t receive results, doesn’t feel part of the team, and doesn’t receive thanks.The speaker said he didn’t like using the word “patient.” Rather than learning from patients, he said he prefers learning with people, suggesting each party brings something new to the table to be considered. While citing related research, the speaker suggested patients should be seen as partners to achieve better results, not just participants. He later elaborated on this, suggesting nothing should be hidden behind people’s backs. Participants heard legislation in the US allows people the right to information but there is a need for tools to make that information more accessible. He advocated for technology in medicine to be highly “permission-based.” This presentation drew several responses. Participants said most people were happy to give over their data, but the challenge was to inform people. Let health care help patients help themselves On Sunday, participants learned about one participant with Parkinson’s disease. She explained how she increased “feel-well time” as a result of self-tracking. The patient used this data to see progress or changes, rather than relying on one hour a year with a doctor. The data collected led to a change in her prescribed medication. She called for health care to help patients help themselves, and proposed the idea of a “lead patient,” who patients are encouraged to become. In the presentation which followed, the speaker spoke about herself and her son dealing with separate illnesses. She shared how health care quantifies both her and her son, tracking changes over years, and medications needed. She suggested many doctors tend to attribute symptoms to generalized demographics, rather than treat cases individually. As a carer of her son, she was treated as an enemy, not an ally. She said patients can help other patients through peer support, and this form of support can actually give more help and strength than what doctors provide.
The Salzburg Global program Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship is part of the multi-year series Health and Health Care Innovation in the 21st Century. The session is being supported by OpenNotes. More information on the session can be found here: www.salzburglobal.org/go/553. You can follow all the discussions on Twitter by following the hashtag #SGShealth
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Health professionals reveal new approaches to recording patients' journeys
Health professionals reveal new approaches to recording patients' journeys
Oscar Tollast 
In 1998, a cross-sectoral mix of Fellows left Salzburg Global Seminar with an idea of a health care system tailored to the patients' wants and needs. This community formed the basis of "PeoplePower." Today, nearly 19 years later, a similar cross-sectoral mix of Fellows is leaving Schloss Leopoldskron with a set of action plans which will make "PeoplePower" closer to reality. Participants from Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship have come up with several new concepts to record a patient's journey. As part of this process, participants have considered how new technology can benefit the relationships between clinicians, patients, and other invested parties. Fellows from different nations have come away with new insights and tools which will inform action plans and encourage them to take leadership roles in their countries.
As part of this process, participants organized themselves into five groups to narrow down the focus of their discussions. These groups focused on education and advocacy, research, relationships, tech and innovation, and community value. Each team came up with a concept to present to their peers.
Global Health xChange (GHx)
Participants who focused on education and advocacy came up with a multifaceted platform. The name of this platform is Global Health xChange (GHx). The participants behind this platform have designed a knowledge hub, allowing users to share research, evidence, and toolkits for patients. If someone signed up as a user, they would take on a role. These roles are match-seekers, storytellers, learners, or knowledge sharers. 
The group came up with a marketing plan targeted at clinicians, patients, and policymakers. As part of the marketing strategy, short videos would be made using real and emotional stories from patients. The slogan for GHx is “Share life. Share knowledge. Share skills.” In response to this proposal, session co-chair Dr. Tom Delbanco said, “This is a remarkable thing, and we’ve got to bring it to life…. We will let ourselves down if this doesn’t happen.”
My Health Mapp
The next group focused on patient-clinician collaboration. The group’s presenter said they aimed to figure out what would help patients while keeping the patient “out of the health care sphere as much as possible.” The group proposed a platform which would allow patients to enter information they felt clinicians needed to know. It would also contain staff biographies for individual clinics. A key element of the platform would be an ongoing virtual to-do list for the clinician and patient, setting targets in between appointments. 
My Health Mapp would act as a portal for information and as a tool to communicate with clinicians. On this portal, patients can empower themselves and keep track of what’s going on about their treatment. The portal would have information on listed medication and could answer questions patients have. Fellows heard patients want trust, goal alignment, ease of access, a clear action plan, and self-management skills. Meanwhile, clinicians would like a similar rapport, an empty inbox, patient safety, a return on investment and high-value care. One of the group’s speakers said, “We’ve got to find a way of getting structured data into a shared space.”
Genius Patient Center
Another team introduced participants to the Genius Patient Center, which will prioritize the needs of the patient. The Center will put together a list of experts which can meet the patient face-to-face or virtually. It will also help make sure a patient’s voice matters, and they feel comfortable to ask for help when required. During the presentation, participants heard a couple of cases studies, which both highlighted how the Center could provide support after surgery and treatment. In such situations, Centers can also look at innovation potential, provide literature reviews, and connect patients to researchers. Patients can be linked up with researchers to create tools to help benefit others. 
In summary, a Genius Patient Center tries to figure out new pathways. One of the group’s speakers said, “All things have to be done with the patient.” The aim would be to create a global federation, a network of experts including patients, and implement a governance structure that gives power to the patients. In addition to having a physical presence, the Center would also have a virtual presence. One of the group’s speakers said, “We’ll try to find the right solution for the right place.”
“Pro-patient power disruption team” A group of participants who focussed on relationships chose to refer to themselves as the “pro-patient power disruption team.” One of the group’s speakers outlined the team’s whole effort concerned “being human.” He said they weren’t dealing with abstract professionals and that it was more about personal relationships. To study this further, one of the group’s members took to Twitter to ask clinicians and doctors what can help break the ice at a first meeting. As a result, participants learned patients wanted a sense of humor from their clinician but also wanted to be believed and spoken to like ordinary people. Clinicians who responded on Twitter said they try to make patients more comfortable by taking an interest in their families, their pets, and interests. 
The group put forward the idea of a virtual Schloss, containing different rooms catering for different patients’ needs. This website would act as a toolbox, featuring a room to make introductions, a room for asking questions (Asking Wisely), and space for personal biographies of clinicians. One of the group’s speakers said there was a lot of commonalities between the groups. The plan is to develop the proposals and circulate them among the Salzburg community. This process provides the chance for modifications before funding is sought. The use of personal biographies caused debate among participants, with some arguing over their usefulness. One participant, however, said when she was receiving surgery, having access to personal details about her physician through a biography put her at ease.
Re-inventing engagement
The final group to present discussed removing the need for patient engagement. This removal could happen by re-inventing health care to be truly person-centered. The team came up with a concept called S.A.R.A, which stands for self-actualised realization and autonomy. The project’s slogan is “Your health in your hands.” A S.A.R.A user is intrinsically engaged, unobtrusively transparent, someone who calls the shots and makes the decisions. A user is a person, not a patient, who collects their data and uses it as a citizen scientist.
Participants were asked to consider primary care as the new tertiary care. Patients could triage themselves and automate the simple things. In one example, the group showed how S.A.R.A. could assist with de-medicalizing hypertension. It involves measurement, prevention, management, and digital concierge. This process then leads to continuity of care. The measurement could take the form of ambient, ubiquitous sensors, or kiosks in the community. Communication can be via SMS, while a conversational agent/AI tool can learn from a user and provide appropriate information.
The group argued if S.A.R.A. were implemented, all knowledge and data would be available in primary care, and there would be enhanced information at the point of care. The group suggested there would be a higher professional satisfaction among clinicians and would eliminate white coat hypertension. However, the group insisted S.A.R.A. could only work if people were educated, and this could start with community education in schools. 
Next Steps
Session co-chair Professor Tobias Esch said he would take away a lot of ideas from the meeting, and he was thankful for the experience. He called on participants to spread the ideas which had been formulated. His co-chair, Dr. Tom Delbanco, also expressed his thanks before he asked participants what they could “realistically” do to keep the good work going.
Delbanco said the session’s initial aim was to encourage participants to bring back insights to their countries and talk about their experiences. One participant asked whether a follow-up to Delbanco’s “PeoplePower” paper could be written. Delbanco joked, “There are so many great ideas [here] it could be a very long paper.”
One participant said she’d like to focus on what a human hospital could be in the land of “PeoplePower,” while another said he’d like to explore diversity and “PeoplePower” further. Delbanco said the concept could be used as a unifying theme to link people’s ideas together. 
Participants debated the best way to communicate their ideas. They were asked to consider how information would be distributed, what audience would be targeted, and - more importantly - what the audience would get from this content. One participant said, “The audiences are far broader than the medical community. This is an area people are definitely looking for solutions.”
Delbanco, who co-founded OpenNotes, said he hadn’t come to Salzburg to ask people to spread the word about OpenNotes. However, he noted one of the things which had come apparent in the discussions is the desire to spread transparency in health care, and that’s something he wanted to continue to encourage.
The Salzburg Global program Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship is part of the multi-year series Health and Health Care Innovation in the 21st Century. The session is being supported by OpenNotes. More information on the session can be found here: www.salzburglobal.org/go/553. You can follow all the discussions on Twitter by following the hashtag #SGShealth
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Cristian Montenegro - Transparency and the clinical efficacy of ignorance
Cristian Montenegro - Transparency and the clinical efficacy of ignorance
Cristian Montenegro 
Cristian Montenegro is a Fellow of Session 553 - Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship. He is a sociologist, currently pursuing doctoral studies at the London School of Economics' Department of Methodology. He specializes in qualitative social research on health policy and services. This post was first published on Cristian Montenegro's Tumblr page. One would think that sharing information with the user (sorry but I think the word “patient” is part of the problem) and make him fully aware of what’s going on with his health is kind of obvious. As long as there’s information being produced about the health status of a person, then why don’t share that information in every available format with that person? If people regularly appeals to transparency laws in order to get access to this kind of information (that’s the case in Chile), why don’t we just give it to them in the first place? During these days I’ve been participating at the Salzburg Global Seminar session 553  called “Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship,” tackling this and other issues. The week-long seminar involves a fascinating cross section of users, health professionals, communication, and technology experts, coming from Brazil, Japan, India, Australia, Canada, the USA, and Chile. 
And again, why do we actually need to discuss something that should be obvious? Well, as usual, it is only when you engage in dialogue with others that you realize how non-obvious things can be, how many different perspectives there are and how ‘opaque’ is ‘transparency’ as a theme of discussion. On top of that diversity, doctors, and clinicians, in general, do have concerns with full transparency. They have a lot to say about it, strong opinions on how positive it is, but at the same time about the risks it entails. In a sense, there’s still something complex about this apparent simplicity of transparency: there’s something about information that’s not simply information.
About two or three years ago, the BBC showed a brilliant documentary series called “The Power of Placebo.” It revealed how placebos had a measurable therapeutic impact and how they indeed produced real changes in people’s bodies, to the point where even the color of the pills used as placebos make a difference in how ‘effective’ they are: Blue pills were less efficacious than red pills, for example. Of course, the show then moved into explaining this situation in purely biochemical terms. But the stubborn sociologist in me explored an alternative explanation based on culture (broadly drawing on this influential text by French anthropologist Claude Levi-Strauss):  Placebos actually work because they are given by a clinician, and the clinician is not just a person, he’s an authorized representative of a socially valued institution called medicine. The healing power responded to the place that medicine has in society, a place of authority and certainty, and “the body,” cultural itself, also responded to this.  
In this sense, while the use of placebos is circumscribed to scientific research, what the documentary reveals has implications beyond the realm of science, implications involving the societal meaning of medicine. How can this be relevant to a discussion on transparency and information? Well, the efficacy of placebos depends on me (a ‘patient’) ignoring something, ignoring that that pill is, in fact, nothing more than sugar. Its healing power, therefore, depends on a carefully controlled economy of ignorance, of knowing and not-knowing, based on the deeply ingrained respect for medicine as an institution. What you know/not know about the real effect of the pill is the foundation of its effect. And on this basis, my point is that whether they do it consciously or not, doctors use the power of what’s known and not known by its patients as a clinical tool, as a mechanism to produce health and improve diagnostic results. They know, at a level of practice, that what you say to a patient (and especially what you don’t say) carries a therapeutic potential. Maybe to rephrase it, information, in a clinical sense, is not “just” information. Is not something that can be moved from one “mind” to another. And the mediation or translation between what the clinician knows and what the user knows is not just a matter of simplification. Clinicians and patients are not simply located in different positions across a continuum of more or less knowledge. There is a culturally sanctioned discontinuity between them upon which the power of medicine is partly based. 
Can we have a discussion on transparency and openness that takes this into account? In my view, we can only move the discussion on transparency forward if we’re willing to problematise the social place of medicine as a whole. And when culture and cultural representations of medicine are brought into the conversation, new signs of hope and new paths towards action can be charted. One representative from Sweden, probably one of the most advanced countries in the implementation of shared medical records told us, very bluntly: “In Sweden, the people owns the health system.” And that means that, of course, they own their medical information. Therefore, and this is important, regardless of the clinical use or the clinical consequences of sharing records, patients already own those records. There is a different relation of ownership and therefore a different cultural approximation towards medicine. I think we need to look carefully at their example, to approach transparency not only in its clinical value but in its cultural roots, as a value in itself.

The Salzburg Global program Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship is part of the multi-year series Health and Health Care Innovation in the 21st Century. The session is being supported by OpenNotes. More information on the session can be found here: www.salzburglobal.org/go/553. You can follow all the discussions on Twitter by following the hashtag #SGShealth
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Liz Salmi - "I hope to keep growing as a patient with the goal of doing something that will be respected by the whole profession"
Liz Salmi - "I hope to keep growing as a patient with the goal of doing something that will be respected by the whole profession"
Andrea Abellan 
Liz Salmi is attending Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship as an advocate for patient access to complete medical records. 
Ms. Salmi was diagnosed with a brain tumor eight years ago. Since then, she has overcome two surgeries and the consequent challenges of being affected by a serious disease. 
Through her high participation in digital platforms, Ms. Salmi has become a voice of patients seeking greater accesses to their own health information. She spoke with Salzburg Global’s Andrea Abellan about her experiences. 
AA: With more than 30,000 visits each year your blog, thelizarmy.com is a reference on patient-focused websites. What prompted you to start blogging about your illness? 
LS: Before my cancer diagnosis, I was working in Marketing and Communications. When I first ended up in hospital, it came naturally to me to start writing about my situation. Eventually, I had to leave my job for a time to focus on my health, but I still felt that my ability to communicate was my strongest skill. 
I started blogging about brain cancer and my health condition immediately became well-known by not only my closest friends and family, but also by people I didn't know. In time I realized that the information I was sharing could be interesting because the number of comments kept growing. The decision to make my blog open was in hopes others could benefit from the information. 
AA: How has your experience of blogging evolved over time? 
LS: The topics I have chosen to blog about has changed a lot since I first started posting. In the beginning, as a newly diagnosed person, the blog was mostly focused on the uncertainties of my daily life. The content was very self-centered. 
After the treatment, I started to get more interested in other things, such as disease-specific research and public policies. Over time, I became more informed on health technology and on the idea of patients engaging more with the information in their electronic medical records. I have grown as a patient blogger just as I could have grown in any other professional “career”. 
AA: How are you involved in the e-Patients’ movement? What activities do you carry out as part of this group? 
LS: There are 40,000 searches made in Google every second, 2,000 of which are related to health issues. The Internet gives people access to information that make it possible for our doctors to be better. 
“e-Patient” is a person who is enabled, empowered, engaged in their health care. If you are engaged in your self-care and research about your health, then you might be an e-Patient. For now we need specific terms to describe this kind of active patient participation, but in the future, I hope this will become a standard attitude. 
AA: You also co-founded Brain Tumor Social Media (#BTSM), a hashtag community helping to connect people diagnosed with brain tumors. How is this group working? 
LS: Twitter has an amazing power to spread information. Health care professionals have realized the potential of the platform to reach their specific target audience. The use of acronyms as hashtags is making it easier to aggregate patients, caregivers, and care providers in the same conversation. 
Charlie Blotner and I were inspired by the online breast cancer social media (#BCSM) community to create something similar for people affected by brain tumors. We host a live tweet chat every first Sunday [of the month] at 6pm PT. These virtual gatherings have become a great opportunity to exchange support and learn about the latest developments in brain tumor research. 
AA: What do you expect from your participation in this session? 
LS: It is exciting to engage with Fellows who are facing the same challenges around the world. This [session] gives us the opportunity to learn how things are working in different parts of the world. 
For years, a complete medical record has been hidden from patients. I think these discussions around transparency and “open access” to information will be a catalyst for increased engagement by patients and lead to satisfaction in healthcare decisions.  Read more in our session newsletter. Download Issue 2 as a PDF
The Salzburg Global program Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship is part of the multi-year series Health and Health Care Innovation in the 21st Century. The session is being supported by OpenNotes. More information on the session can be found here: www.salzburglobal.org/go/553. You can follow all the discussions on Twitter by following the hashtag #SGShealth
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Health care with a focus on communities and families
Health care with a focus on communities and families
Oscar Tollast 
During the session Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship, participants have learned knowledge is not enough when it comes to tackling issues and creating pathways forward. A successful patient-clinician relationship is not only built on facts and figures. It should also be based on trust, understanding, and taking into consideration the patient’s motivation. These factors take on a further degree of importance when it comes to providing care in the communities and supporting family members.
In between plenary sessions held on Saturday, participants learned about motivation in health care, and what changes for families, friends, and communities. Session co-chair Professor Tobias Esch discussed the neuroscience of motivation and self-care.
The word motivation comes from the Latin word “movere” - to move. Building on this, Esch said there were three types of motivation. Type A concerns moving toward something or wanting something. Type B is about avoiding or escaping something. Type C, meanwhile, is about staying and attaching yourself to something.
Type A is associated with pleasure, which you can obtain after passing through stages of creativity and learning. Type B, on the other hand, is linked to a state of relief, which can stem from protection and survival. Type C, simply put, is associated with happiness. 
All three types of motivation can be linked with patients at different stages of their lives, according to Professor Esch. He suggested Type A was often found in young people, while Type C involved those aged 65 and over. The majority of people in between these age groups are linked to Type B.
Esch cited research which suggested humans had three basic needs: existence, relatedness, and growth. Existence is a concern for those with a Type B form of motivation, while relatedness is closer to those experiencing Type C. Growth, meanwhile, has a closer match with Type A, as young people look to grow and move toward something.
Insights from behavioral economics 
Following this talk from Professor Esch, participants received new insights from behavioral economics and how this could affect decisions made by health care professionals.
To begin with, the speaker discussed the shaky foundations of health policy. These foundations included shared decision making, nutrition and calories labeling, performance incentives, informed consent, health care cost or quality transparency, and health insurance deductibles and copayments. These approaches are based on the view that given enough information, people will make decisions most likely to achieve self-interest. 
By bypassing cognition, however, the speaker suggested health care professionals could obtain more positive results using behavioral reflexes. He claimed the science of motivation had evolved. Participants heard, “Once you recognize that people are irrational, you are in a better position to help them.” The speaker provided a list of examples of where this irrationality could be used for good. For example, a solution to regret aversion is alerting people to what might have happened. 
Discussing life in the U.S., the speaker remarked upon health insurance choices, which can be presented in a fashion difficult to understand. He said an incentive you cannot understand could not work, and in designing complex incentives, you are giving up some value. 
Participants were asked to consider what they heard through the lens of a patient and that of a clinician. One responded, “If you want to change a behavior, the new behavior has to feel as good as the one you change.” 
What changes for families, friends, and communities? 
On Saturday afternoon, participants were also asked to consider certain scenarios and how they might play out. They broke off into six groups and were given individual topics to develop a presentation around. These topics included chronic condition, elder care, the personal experience of using OpenNotes, the family caregiver, the problem patient and the problem clinician, end of life care, and sexual health. 
In this interactive plenary session, participants considered how private, and secure AI tools similar to Siri could tackle the taboo of discussing sexual health. An idea for an online platform called “Check-in Now” was also put forward, which would allow patients with a chronic condition, their family members, and doctors to have access to data in one place. 
Participants heard family caregivers want to be able to communicate with health providers quickly, and should receive more tools and support. One participant said caregivers would like a seat at the table, one as important as the patient’s and the health care professional’s. 
Transparency with socially at-risk and culturally diverse patient populations 
Participants also looked at transparency with socially at-risk and culturally diverse patient populations. The speaker leading the event talked about the origins of mistrust in medical care found in socially at-risk groups. This mistrust can stem from a legacy of discrimination, disparities in access and quality of care, and disparities in interpersonal treatment. 
She said those at risk included ethnic minorities, religious cultural minorities, low-income groups, people with low health literacy, people with disabilities, and people from the LGBTQ community. 
The speaker said to enhance transparency there should be a focus on disclosure, clarity, and accuracy. To engage patients, health providers should consider one-on-one coaching, group-based classes, web-based interventions, patient portals, and mobile apps. What’s important to remember, she claimed, is that cultural, social, language and literacy adaptation remains critical in this process.  Read more in our session newsletter. Download Issue 2 as a PDF
 The Salzburg Global program Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship is part of the multi-year series Health and Health Care Innovation in the 21st Century. The session is being supported by OpenNotes. More information on the session can be found here: www.salzburglobal.org/go/553. You can follow all the discussions on Twitter by following the hashtag #SGShealth
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Dr Tom Delbanco - The benefits of sharing medical details with a patient will outweigh the risks
Dr Tom Delbanco - The benefits of sharing medical details with a patient will outweigh the risks
Andrea Abellan 
After hearing the enthusiasm with which Tom Delbanco talks about his life in medicine, nobody would say he could have done anything else other than work in that field. Surprisingly, at college, he was studying to be a political scientist, before eventually changing his career plan. Dr. Delbanco has led three previous sessions at Salzburg Global Seminar. He says this is the perfect place for someone like him, with “the generalist disease,” as it always helps to have his curiosity piqued here. Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship is his fourth session and, in contrast to what happened on previous occasions, this time he hopes to act more as an observer rather than as a leader of the discussions.
OpenNotes is one of his most acknowledged achievements. He has led the organization together with Jan Walker since its creation in 2010. Dr. Delbanco recognizes the impact that his participation at the Salzburg Global Session, Through the Patient’s Eyes: Collaboration between Patients and Health Care Professionals, has had on him: serving as an inspiration to develop the digital platform. Discussions about the mythic nation of PeoplePower gave him the basics of what a patient-centered system should look like. He shared the outcomes of that meeting on a paper which has been circulated among the current group of participants at Schloss Leopoldskron. This paper is entitled Healthcare in a land called PeoplePower: nothing about me without me. Looking at the improvements in health technology 19 years later its seems that PeoplePower was more than a utopian proposal. 
The book Asylums: Essays on the Condition of the Social Situation of Mental Patients and Other Inmates, written by sociologist Erving Goffman, has also played a key role in the development of Dr. Delbanco’s ideas. The book describes mental hospitals, concentration camps, and prisons, as “total institutions,” places where two groups of people are forced to live together. One of the groups is in charge of taking care of the other that certainly does not want to be there. Unhappily, the two groups tend to form separate societies, with an invisible wall between them. In reading this book, Dr. Delbanco started to reflect on “the invisible walls that also divides patients and health care workers,” a phenomenon he has experienced from both angles. Dr. Delbanco served as the founding Chief of the Division of General Medicine and Primary Care at Beth Israel Deaconess Medical Center in Boston for 30 years, and during this time he could see “how the medical staff interacted with each other while ignoring patients.” When he was a patient himself he could understand the situation better and realize the urgency of “breaking the walls down,” he says. 
Dr. Delbanco shows his positivity regarding the future of electronic medical records. But he recognizes a backlash towards them coming from some health professionals. “Doctors may say they hate them, but at the same time they panic if you ask what would happen if we would stop using them.” Dr. Delbanco trains his students on the use of digital platforms, even if for him the best teachers are still patients: “It’s equally important to have patients able to correct the notes a doctor has written about them.” He is an advocate of transparency, but he still recognizes the negative impact that sharing all the details with a patient can have. Overall, he thinks “the benefits will outweigh the risks.” 
When asked about where the US medical system is going now, with everyone now focused on the political situation in the country, Dr. Delbanco answers from a very medical perspective. “It’s very easy to make a diagnosis, but hard to come up with the treatment.’’ For him, the main concern is still how to subsidize the health system and assist the 20 million citizens who are still not covered. Overall, he expects that the government will have a difficult time undoing past achievements. 
Dr. Delbanco talks about himself as a person who finds it very difficult to slow down and as someone who likes “solving problems fixing things that do not work.” In fact, now that OpenNotes is working efficiently, with more than 12 million patients registered in its database, Dr. Delbanco has decided to get involved in a new project. OurNotes is his next plan, in partnership again with Jan Walker, who describes the project as “going from passive reading patients to active writing ones.” The idea is to have patients co-produce the records by writing their own medical history and stating their own priorities. 
Dr. Delbanco expects to leave Salzburg feeling surprised as has happened in every past occasion. He wants to go home thinking “Why hadn’t I thought about these ideas before?!” He also wants to keep this session alive after it ends on Wednesday. 
“I believe that new media and social media platforms are changing a lot and can help us with this purpose,” Dr. Delbanco concludes.  Read more here in our session newsletter. Download Issue 1 as a PDF
The Salzburg Global program Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship is part of the multi-year series Health and Health Care Innovation in the 21st Century. The session is being supported by OpenNotes. More information on the session can be found here: www.salzburglobal.org/go/553. You can follow all the discussions on Twitter by following the hashtag #SGShealth
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What full transparency means for patients and clinicians
What full transparency means for patients and clinicians
Oscar Tollast 
When contemplating new ideas of recording a patient’s journey through health and illness, one has to look at how each party involved could benefit from it. For example, an Internet-based patient record, as proposed in the Salzburg Global session Through the Patients’ Eyes: Collaboration between Patients and Health Care Professionals, could be easier to edit and track for a patient, and could save more time in the long-term for the clinician. While this may sound appealing, this answer leads us to ask more questions. 
What difference might full transparency make in different health systems around the world? Is the final blow to medical professionalism? Participants of Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship were asked for their thoughts on these questions on the second day of the five-day session.
OpenNotes
OpenNotes, which is supporting Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship, is a U.S. organization which encourages health professionals to share the notes they write with the patients they care for. Before considering the pros and cons of transparency, they learned about the organization’s origins.
Speaking at Salzburg Global, Jan Walker, co-founder of OpenNotes, revealed the organization was established following a successful study. Despite doctors having initial concerns they would undertake an increased workload, the 12-month experiment which followed proved to be an overwhelming success.
After 12 months, doctors barely noticed the notes had become accessible. Those who had taken part completed a survey. Of those who responded 99 percent said they would like the experiment to continue. At the end of the study, not one doctor signed off. Patients felt they understood how to take better care of themselves. The study also found those people with the lowest literacy levels appreciated having accessible notes the most. 
The initial study took place in three institutions. All three voted to keep the OpenNotes system in place. 
Participants learned OpenNotes has grown exponentially. Its mission is to get adopted across the US and become the standard of care. The study, which concerned 20,000 patients, started in 2010. The paper was published in 2012, and OpenNotes’ patient database passed 12 million people a month ago. 
The question whether a patient could potentially erase or edit medical notes was described as a “central issue” which would be discussed during the week. 
Transparency: the final blow to medical professionalism 
Participants were later asked to consider in greater detail the pros and cons of full transparency in health care systems. 
To spark debate among the crowd, a participant representing each side of the argument took to the stage to offer talking points from their side’s perspective. 
The participant arguing for full transparency in health care said there were several ethical, logical and evidence-based arguments to show transparency is essential to professionalism in medicine. 
She argued to make a health care decision, a patient must be well-informed, and information which is deemed essential must be disclosed. 
The participant put forward the point that physicians must be honest with their patients to empower them to make decisions about their treatment. She added health care was most effective when patients were active and engaged. 
The participant arguing against full transparency in health care played the role of a doctor who said, “I have a body of knowledge [patients]don’t have.... I have to be efficient. I must not frighten them. I must not put them at risk.” 
The participant against full transparency also put forward the case that a transparent, open notes system could put patients at risk of having their data being hacked. 
After each participant had offered their opening arguments, both were given a chance to provide supplementary points. 
The participant arguing for full transparency said there were ways to implement transparency which would give clinicians more time. 
In response, the participant against full transparency said the arguments of investing now and receiving a pay-off later had all proven to be in vain. 
Participants were split into two groups and were asked to consider more arguments for either side. One-half of the room would argue for full transparency, the other half would argue against. 
There were contrasting views as to whether transparency could move health care workers toward professionalism. While someone arguing for full transparency suggested it could, another participant said professionalism was earned in a different manner. 
There was also a difference of opinion when it came to the matter of accountability. The participant playing the role of the doctor against full transparency said he would be protecting his patients more so than anyone else, as they wouldn’t be held accountable for the medical notes. 
This argument was countered with the claim that patients had to be accountable for their health, absolving them off that was not good for them or their clinician.  Read more in our session newsletter. Download Issue 1 as a PDF
The Salzburg Global program Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship is part of the multi-year series Health and Health Care Innovation in the 21st Century. The session is being supported by OpenNotes. More information on the session can be found here: www.salzburglobal.org/go/553. You can follow all the discussions on Twitter by following the hashtag #SGShealth
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