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Secure health data solutions must clear the way for better health

There was a full house when HealthD360 marked the start of an ambitious project about creating better health through new health data from the citizens’ smartphones and wearables. The day was jump-started with big visions, but at the same time, the challenges related to safety, trust, and ethic were highlighted as central.

26.02.2019: Signe Herbers Poulsen

The sun was shining warmly through the big windows in The Ambulatory, when HealthD360 on the 18th of February flung the doors open to a kick-of event about health data on Aarhus University. The caretaker had brought more folding chair from the basement, so there was enough seats for the 100 interested people who attended.

An investment in the future

Lars Bo Nielsen, Dean of Faculty of Health at Aarhus University welcomed with a request that we as society dare to take the next step and make use of the possibilities that lie in health data. He emphasized the advantages of optimizing the healthcare system and customizing unique health solutions for the benefits of the individual citizen. At the same time, he expressed the wish that the skepticism – that often appears in connection with health data – will not obstruct the existing obvious potential that can improve the health of the Danish citizens.

Lars Bo Nielsen rounded his presentation off establishing that he is looking forward to following HealthD360’s work with combining existing data with new types of health data: “Aarhus University can see a great potential here, and I hope that HealthD360 contribute to show the direction in which we can apply new types of health data in the future.”

“Aarhus University can see a great potential here, and I hope that HealthD360 will contribute to show the direction in which we can apply new types of health data in the future.”

Lars Bo NielsenDean of Faculty of Health, Aarhus University

Tore Duvold, assistant general manager at The Innovation Foundation, also focused on the big potential in health data and better utilization of the new data sources from ex. smartphones and wearables. The Innovation Foundation sees this field as a good investment in relation to reducing the rising cost in the health care system and value creation for the citizens. He said: “We are all different– and must be treated differently. This is where data enters the scene” and emphasized the possibilities of enhancing individual treatment courses for the citizens on basis of their own data

Tore Duvold spoke approvingly of HealthD360 as an important project and made it clear that the Innovation Foundation is very interested in investing in projects like HealthD360. At the same time, the foundation is aware of the challenges, which are existing concerning safety, ethic and access to data and therefore they have started a collaboration across the projects that they support economically. It is of specific importance to establish an approach to data respecting the concerns the citizens may have. He ended his presentation pointing out that the project is very ambitious – especially because of the partnership behind the project, with 19 partners working together. Tore Duvold advised the partnership to work continuously with conflicts and challenges, which can arise in the progress.

"It is important to establish an approach to data respecting the concerns the citizens may have."

Tore DuvoldVice president, Innovation Fund

Solutions that create value in practice

Subsequently, the two founders of HealthD360 - Carsten Obel, professor at Department of Public Health, and Kaj Grønbæk, professor and Head of Department of Computerscience at Aarhus University - presented the project. Carsten Obel outlined the background and highlighted the great healthcare challenges such as the demographic development with an increasing amount of elderly, widespread diseases, and lack of coherence in the existing healthcare system. At the same time he emphasized the need for alternative models to the American and Chinese approach to the use of healthcare data. In his description of the idea and goal of the project he established that the most central focus must be on creating value for the citizens and demonstrate solutions that can be implemented and function in the practice.

Kaj Grønbæk specified the plans of the project with an example about the fictional girl, Ida. The example is inspired by some of the de challenges the municipality experience with young girls in poor mental well-being. He described how new types of health data about Ida’s sleep, mood, activity level, time in front of a screen, and registration of challenges during the day can contribute to giving her an earlier and more individual treatment. Eventually, Kaj Grønbæk gave an insight an insight in some of the technical work in the project and use of for example machine learning, visual data analysis, and open source solutions.

The battle about the citizens' data

The line of presentations was broken by a little survey, where the audience were asked who the are willing to share their health data with. Questions and answers were basis of the subsequent group discussion. The overall tendency was that many have confidence in the public healthcare system and are willing to share various self-measured data about hight, weight, heart rate, food and liquid intake, and health care record with general practitioner, sundhed.dk, and municipalities and regions. The confidence that the citizens' healthcare data is handled safely and anonymously is also bigger compared to the public system compared to private technology companies and insurance companies.

Af besvarelserne fremgik, at motivationen for deling af data er, at man som borger selv får en bedre behandling, kan bidrage til forskning og understøtte bedre sundhedsløsninger for alle. Det er kun i lille grad muligheden for forsikringstilbud og betaling for data, der driver værket. Blandt de væsentlige begreber, som de fremmødte noterede om sundhedsdata var sikkerhed, tillid og etik. Se resultater af undersøgelsen her.

Jakob Uffelmann, chef for modning og innovation ved Sundhed.dk talte efterfølgende om nye borgergenererede sundhedsdata i et nationalt perspektiv. Han understregede, at der er tale om et nyt felt, som indebærer nye spørgsmål og udfordringer i forhold til, hvad vi definerer som borgernes data, hvad de må bruges til og af hvem, samt udfordringer i forhold til objektivitet og ejerskab. Uffelmann argumenterede samtidigt for, at det offentlige skal tage ansvar for integration af disse data og tilbyde en ”safe habour” (en sikker havn) til borgerens data, frem for kun at overlade det til de private aktører som Google og Apple.

Et nordisk manifest for sundhed

Bogi Eliasen fra Instituttet for Fremtidsforskning var igennem på en udfordrende Skype-forbindelse. Ikke desto mindre stod hans afsluttende budskab om ”et nordisk manifest for sundhed” klart efter præsentationen. Bogi er initiativtager til en nordisk scenarieproces, hvor en række nordiske aktører på sundhedsområdet diskuterer og kortlægger fremtidsscenarier for sundhed i de nordiske lande. Dette arbejde skal munde ud i et ”New Nordic Health Manifesto”, der er inspireret af det nordiske samarbejde om manifestet for Ny Nordisk Mad. I sundhedsmanifestet vil partnerskabet arbejde med at formidle, hvordan sundhedsdata i fremtiden kan anvendes på en ny måde i de nordiske lande og samtidigt præsentere et alternativ til den amerikanske og kinesiske tilgang til sundhedsdata.

”Det kan føre til viden, der ikke kun er relevant i en forskningssammenhæng, men også kan bidrage til bedre sundhed for borgerne”

Isaac KohaneProfessor, Bioinformatics, Harvard University

Kick-off arrangementet blev afsluttet med et video-interview med Isaac Kohane, professor i Bioinformatics ved Harvard University. Han deltager ligesom Bogi Eliasson i advisory boardet for HealthD360. Kohane fremhævede de danske register-data og de muligheder, de giver for at følge patienter over længere tid, som noget helt særlig. Han understregede, at hvis vi i Danmark formår at udnytte disse muligheder, vil vi om 10-20 år komme foran USA. ”Det kan føre til viden, der ikke kun er relevant i en forskningssammenhæng, men også kan bidrage til bedre sundhed for borgerne” sagde Isaac Kohane. Han konkluderede, at han i forhold til selvmåling og nye typer sundhedsdata ser mange muligheder og udfordringer og glæder sig til samarbejdet med HealthD360.

Carsten Obel samlede op på dagens hovedpointer med udgangspunkt i et visuelt referat tegnet af Jody Ghani, der deltog på vegne af The Animation Workshop, VIA University College. Se visualiseringen her.

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