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Participants unveil plans for a startup, an NGO, a Digital Health Initiative for Iceland, and a "Self-Care Revolution" The Fellows and staff of Session 548 | The Promise of Data: Will this Bring a Revolution in Health Care?After five days of intensive discussion surrounding the benefits and pitfalls of Big Data in health care, the participants of Session 548 | The Promise of Data: Will this Bring a Revolution in Health Care? presented a series of action plans to take their work forward once the session came to an end on March 27.The first group to report shared an outline for a Salzburg Statement on Data Sharing for the Public Good. Salzburg Statements from previous Health and Health Care sessions have been cited in the House of Commons in London, UK, the World Health Assembly in Geneva, Switzerland, and the ISQua African Regional Meeting in Accra, Ghana.The vision proposed was of knowledge-driven health care available worldwide, allowing medical decisions to be fuelled by data. There is a pressing need for this as poor health impacts not just individuals, but also communities and businesses. Therefore input is required from all sides in order to achieve positive outcomes for everyone.Participants identified a need to build content, trust, equity and capacity in data sharing. It is especially important to build an infrastructure to allow data to be shared easily, in a manner understandable to a broad audience that may have poor health literacy.It was acknowledged that policies implemented today should not be considered static, as big changes could be expected five to 10 years from now.The second group proposed a startup to create an app connecting the iPad doctor with the iPhone patient. The participants stated that there were already a plethora of health apps for patients to track their own data, but there was a missed opportunity to integrate apps into the doctor/patient relationship.The app must be customizable to measure only the outcomes the patient is interested in, such as losing weight or sleeping better. This would feed into the negotiation phase between the patient and doctor, as the two find the intersection between the patient’s interest and the doctor’s concerns, such as better nutrition or more stable glucose levels. Crucially, the app must have variable privacy settings to allow the patient to share their data with whoever they wish, creating a support network of people willing and equipped to help the patient achieve their goals. Finally, the app must be “sticky”, whereby the patient continues to use it because they want to, thus encouraging elements of gamification to be built into the app. Lastly, it must be co-produced with patients and providers to cater to the requirements of both.One participant from the Icelandic public health sector was able to bring home an Icelandic Digital Health Initiative created by members of their working group.The vision of the initiative was to improve the health of the population and drive value in the health care system using a personalized medicine approach. The process would begin with the selection of patient needs and aim for the highest intervention impact possible by health providers. With the data already available it would be relatively easy to identify a list of patients and diseases that deserved priority attention, with the public continually informed of progress and able to give feedback to the steering committees overseeing data use. It was deemed necessary to find a business model for making this happen, with incentives for key stakeholders among the public, government and private industry.The fourth group concentrated on finding ways to improve the new strategy in development for NHS England. One priority was to collect more data from where care occurs outside of hospitals, including GPs and community care schemes. It was especially important to gather more data on patients’ preferences and goals, which one participant called the “serenity” aspect of care. Guidelines should be written in code instead of English to enable easier checking to see if they are being followed. While data is currently brought into the system at collection points and manually coded by humans, the NHS is moving towards automatic extractions to “suck data from out the back” as the NHS goes paperless. It was suggested that there was a role for Salzburg Global Seminar in establishing international standards for national health care datasets.

View full set on FlickrThe next group was asked to “scan the horizon” and think big about the future of Big Data. They predicted that there would be no GPs by 2025, as instead patients would consult their Personal Health Promotion Counsellor (PHPC) as part of a two-way equal partnership. Once the patient agrees with their PHPC on the outcomes they want to achieve, their smartphone will be tailored to send messages to help them stick to their plan, such as warning the patient not to buy certain foods. Electronic health records will make it easier for patients likely to suffer from genetic diseases to warn family members to seek treatment.The group examining medical education identified three challenges: out-of-date curricula, inefficient education delivery methods and inadequate inter-disciplinary collaboration. The group sought to foster trust among medical students in using data as a tool, and urged greater collaboration between medical students and data experts so students know who to turn to in order to get what they need. They stressed that the patient equipped with an iPad, iPhone and Apple Watch to gather and submit their own data should be included in the clinical team. Another group proposed creating a data-driven value NGO under the umbrella of Salzburg Global Seminar, focusing on translating medical knowledge into value for health care. Their roadmap aimed to convene those with resources to contribute to those interested in learning. The NGO would disseminate knowledge, best practices and resources, for example training patients to manage their health with data-driven knowledge. The organization would draw upon existing examples to inform its work, for instance the semiconductor NGO formed to cross lines of communication and overcome obstacles in order to preserve a dying industry. It was proposed to use Salzburg Global to access its global network of Fellows and identify funding sources, but the NGO should eventually move away from a board of directors model, as this can be too slow for those describing themselves as “disruptive innovators”. The final group outlined a forthcoming data-driven self-care revolution. The only way for patients to quickly bring about the change they want to their health care is via a bottom-up approach, as it takes an average of 15 years for new treatments to reach the market. Instead of proposing radical new methods, patients should focus on consulting with their doctor how to best use existing treatments to improve the outcomes that really matter. The tools exist now to allow patients to collect their own health data from the 8,700 hours a year they spend awake, in order to more productively use the one hour a year they spend with their doctor. It is important for patients to measure their data systematically, and not just on good or bad days.One participant ended the presentations by advising funders to invest in the badly-needed field of self-care, declaring, “This can change the world.”

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The session The Promise of Data: Will This Bring a Revolution in Health Care? is part of the Salzburg Global series “Health and Health Care Innovation in the 21st Century” and was held in collaboration with the Mayo Clinic, Arizona State University, The Dartmouth Center for Health Care Delivery Science, and in association with the Karolinska Insititutet. More information on the session can be found here: www.salzburgglobal.org/go/548