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

The Child in the City - Health, Parks, and Play
The Child in the City - Health, Parks, and Play
Oscar Tollast 
In some cases, a park is an often untapped treasure. It can be used for exercise, reflection, fun, and relaxation. Having an open space to go to in proximity of one’s home is essential for people’s welfare and quality of life. The world, however, is becoming increasingly urbanized, with almost 70 percent of the world’s population expected to live in urban centers by 2050. In these dense urban spaces, where will this treasure be found? A plan needs to be formulated to take this prediction into account. John Muir, one of the world’s most famous and influential naturalists, once said, “The power of imagination makes us infinite.” This notion becomes apt when we reimagine cities through the eyes of the child, an individual whose creativity knows no bounds. Wise investments and nature-based solutions could put human-centered design at the heart of urban transformation while providing a cost-effective way to improve public health. At Salzburg Global Seminar, experts and game-changers will convene at The Child in the City: Health, Parks, and Play to take this conversation forward. This program is the third session of the Parks for the Planet Forum, held in partnership with the International Union for Conservation of Nature (IUCN). The Huffington Foundation, the W.K. Kellogg FoundationParks Canada, and the Korea National Park service will provide further funding and programmatic support for the session. The Park for the Planets Forum, convened by Salzburg Global and embedded in the IUCN Global Protected Areas Programme, advances action, investment and leadership to implement the Promise of Sydney and the Sustainable Development Goals. The latest session held under this series will be marshaled by two co-chairs: David Anthony, Director of Policy and Analytics, UNICEF, and Kathy MacKinnon, Chair of IUCN/World Commission on Protected Areas. They will help lead around 50 experts from different generations and sectors, all of whom have perspectives related to the issue of children in cities and associated planning, policy, and investment decisions. Participants will take part in a highly interactive program combining theory, policy, and practice. There will be a combination of panel discussions and presentations, featuring leading experts and skilled practitioners. Those taking part will spend time in small thematic groups to identify the key challenges and create new agendas and policy recommendations.  There is a growing body of evidence that says a personal experience of nature in childhood is essential to generating a lifelong sense of connectivity and stewardship for the world’s environment. Participants will be asked to take an imaginative approach, looking through the eyes of young children, developing new collaborations that will benefit individuals, families, and long-term social, economic and environmental resilience.  Narrowed down further, this will include improving outcomes for early childhood development and education; individual and family health; community resilience and cohesion; and, environmental protection and conservation. Participants will explain what policies and frameworks need to be put in place to enable this to happen, and what else is required to advance an agenda for “the child in the city.” During the next few days, participants will consider:
  • How can parks and protected areas better meet the needs of, and be accessible for, all children – including the most vulnerable, marginalized and underserved – enabling and encouraging them to play, create and find joy in nature?
  • How can the benefits of public green spaces be maximized for the physical, mental and social health and well-being of children and, by extension, families, and community?
  • What are the implications for urban planning, design, and management if the needs of children are placed at the center, especially related to accessing and enjoying nature, improving health and development?
  • How can the long-term economic benefits of improved child health and development through access to nature be more clearly calculated and communicated to inform strategic investments
Participants will be tasked to push forward a new change agenda to promote access to nature, health, and development for children and communities in growing urban centers. They will also agree on strategic recommendations to share at the 15th World Congress on Public Health, taking place in April, and other leading international forums.
The Salzburg Global program The Child in the City: Health, Parks and Play is part of the multi-year Parks for the Planet Forum, a series held in partnership with the IUCN and Huffington Foundation. The session is being supported by Parks Canada and Korea National Park. It is being sponsored by the W.K. Kellogg Foundation. More information on the session can be found here: - You can follow all the discussions on Twitter by following the hashtag #SGSparks
Dr Menon-Johansson - "For me electronic records are like black boxes on airplanes, they allow you to manage information"
Dr Menon-Johansson - "For me electronic records are like black boxes on airplanes, they allow you to manage information"
Andrea Abellan 

Dr. Anatole Menon-Johansson’s testimony is clear proof of the successful integration of digital health tools in everyday clinical activities. Menon-Johansson’s professional experience is focused on sexual and reproductive health. He puts his energy in various activities; he is the clinical director for the charity Brook, the lead of the integrated service at Guy’s & St Thomas’ NHS Foundation Trust and the founder of two innovative social enterprises: SXT and SH:24.

Menon-Johansson is a passionate advocate of the possibilities technology offers to assist patients. He decided to start using digital tools a long time ago, starting a decade ago with the use of text messaging results. Through this system he sees patients getting back more promptly to reduce the spread of infections. Text messaging is now a standard practice in sexual health care, but Menon-Johansson was one of its early adopters.

The Sexual Health Clinic he leads in London became completely paper-free four yours ago. “We have all data saved in one single platform, which helps us to monitor our activities. For me electronic records are like black boxes on airplanes, they allow you to manage information properly,” he explains.

Patients can make online appointments through booking service Zesty. Their time spent in the waiting room is reduced with the digital queues that a software named Qudini enables. Patients can get registered in the reception and then leave if they want to do anything else. A text message will let them know when their time arrives. In the meantime, they can keep their position in the line. “We have digital tools involved in the whole process, since a patient books the service and waits to be seen until they get their results back by an SMS,” the doctor states.

The platform that Menon-Johansson designed, helps users to find the right service when they need to get tested for sexually transmitted infections, and if they need advice for abortion or sexual violence support. Another interesting adaption of the platform is the partner notification through which users can anonymously inform their sexual partners about a diagnosis. The sexual partners are advised on the best options to be tested. Another webiste he has helped to design, is focused on providing free testing for sexually transmitted infections (STIs). Its functionality is easy to navigate and oriented to preserve the confidentiality of users who receives the test and the results within 72 hours.

Menon-Johansson presented his web-based emergency contraception calculator during the Salzburg Global session Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship. He says, “In the UK we have 186,000 abortions every year. We expect about 400,000 births, but we end up with 700,000. These numbers show the real disconnection between what women want and what actually happens to them.”

Thus, Menon-Johansson explains, it is important to keep raising awareness of contraception methods. He supports the use of the Intrauterine Device (IUD) with copper as one of the methods offering better results. Menon-Johansson argues, “Research proves that it’s more reliable than any other emergency contraception method. I want to make sure that women understand that there are good alternative solutions they can benefit from.”

The calculator service has a positive effect on the doctor-patient relationship too. It helps women analyze the data they have stored on their phones so they can have an idea of their risk of pregnancy and of the options they have. Menon-Johansson says, “I have real troubles when this information is not given to a woman before she meets the specialist because then she can feel under pressure to follow the doctor’s instructions and that goes against their autonomy.”

The calculator was well received by the Fellows, who provided Menon-Johansson with useful advice. Most of the suggestions were oriented toward a better promotion of the platform. Participants proposed to include advertisements in social media channels, games or dating apps seeking to reach young women who might be those facing a bigger risk. Menon-Johansson explains that one of the biggest challenges he finds when developing health care technology is convincing a still very conservative audience. He says, “I have already proved that the system I’m using works, now I want to show its potential to amplify the quality of the health care system and to support clinicians in their work.”

The calculator is currently only available in the UK, but Menon-Johansson expects this will change soon. In May, he is attending the Health 2.0 Europe conference which will take place in Barcelona and hopes this event will open the doors to the Spanish market.

Menon-Johansson says he is leaving Salzburg Global feeling richer in knowledge and is looking forward to implementing many of the suggestions fellow participants have given to him. He says, “I have enjoyed the way the seminar has evolved from exposing problems to looking for solutions. It’s always important to reflect about how to implement good ideas that can make real things happen.”

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: You can follow all the discussions on Twitter by following the hashtag #SGShealth

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: You can follow all the discussions on Twitter by following the hashtag #SGShealth

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: You can follow all the discussions on Twitter by following the hashtag #SGShealth

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: You can follow all the discussions on Twitter by following the hashtag #SGShealth

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, 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: You can follow all the discussions on Twitter by following the hashtag #SGShealth

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. 

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 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: You can follow all the discussions on Twitter by following the hashtag #SGShealth

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