Health Professionals Reveal New Approaches to Recording Patients' Journeys

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Mar 17, 2017
by Oscar Tollast
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Health Professionals Reveal New Approaches to Recording Patients' Journeys

Fellows from Toward a Shared Culture of Health present action plans which aim to enrich patient-clinician partnership Participants taking part in an open exchange at Schloss Leopoldskron during Session 553

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