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Making a difference with data

Data donation: better health and quality of life for all

What is data donation?

Data donation is when patients make health data such as X-rays or laboratory results available to medical research. Scientists can analyze this information and gain new medical insights. Research that is both large-scale and precise can help find suitable treatments that take individual aspects of human health into consideration. That’s the idea behind medical data donation.

Data donation: research of the future  

While data donation is already a subject of widespread public debate in countries like Australia and the USA, the term is still largely unfamiliar to the general public in Germany. But what exactly does this term mean? Donating health data to research – mostly in anonymized or pseudonymized form – promotes early disease detection and optimizes various types of treatment. Personalized research findings contribute to a greater understanding of diseases and, in the best case, save lives.

Big data: data analysis for Alzheimer’s research

Alzheimer's disease, HIV, and diabetes are a few examples of fields where research is limited. Large data sets collected over long periods of time are often not available since these long-term studies were not initiated in the past. Gaining access to the results of on-going, long-term studies would be just as helpful as analyzing donated data itself. Securing necessary financial resources also remains a significant hurdle. With this in mind, it’s easy to recognize the urgency of a large research database. It’s not only about collecting new data, but also making existing data more available to research. Health data sets, which were previously being analyzed in isolation, can now be compared and evaluated with respect to one other. Ultimately, the decision to donate data anonymously to research lies with the patient. Relevant data primarily includes medical histories, diagnoses, prescribed treatments and their duration, as well as the patient’s gender and age.

But how can donating data help medicine? In 2018, approximately 1.7 million people in Germany were affected by dementia –  most of them with Alzheimer's disease [1]. Without quick and significant progress in the prevention and treatment of dementia, this number could rise to three million by 2050. Alzheimer's disease is a perfect example of how urgently researchers need people to donate data voluntarily. 

Smartwatches and healthcare apps: a large untapped data pool

Besides medical tests and doctors’ assessments, health apps and wearables are important sources of data collection [2]. According to Accenture Consulting, one of the world's largest management consulting and technology service companies, 33% of Americans were already using wearables such as Apple or Android smartwatches by 2018. These collect information relating to vital signs and movement such as pulse, heart-rate, and the number of steps taken per day. Corresponding apps provide initial analyses of the values and data measured. While these do not serve as medical indicators, they provide a general overview of personal fitness. Usually, this type of software can recognize patterns and deviations from the norm, providing information about health problems. If such information were to be collected on a long-term basis, for example in an electronic health file, it could be properly evaluated. This health information is not only useful for the wearer of smartwatch (or other wearable), but also for research in a wider context. And yet, so many people are unaware of how important it is to make health data collected by these armband computers available to research. Thanks to modern technology, many people already have access to a wealth of information that is being recorded on a daily basis – and a 2019 Forsa study shows that more and more people are willing to donate data to medical research [3].

More relevant than ever: data donation in the fight against coronavirus

Data donation can also play an important role in the containment of novel coronavirus infections. Data collected via wearables provides information about activity, heart rate, body measurements, age, and more. This information can be scientifically evaluated and deliver findings on specific symptoms like fever and altered sleep patterns, which are also associated with COVID-19 disease. These findings are not a substitute for coronavirus testing and do not provide diagnosis. However, this information could help draw conclusions about the spread of coronavirus infections, especially when collected in large quantities and used in conjunction with other datasets.

The Robert Koch Institute (RKI) recently launched a data donation app for voluntary use after recognizing the opportunities of data donation [4]. With the Corona Data Donation App, users can donate data from certain types of fitness bracelets and smartwatches. The RKI hopes to gain insights on the spread and actual number of coronavirus infections in Germany. According to the RKI and an American study, the use of data from wearables has already provided valuable information on previous outbreaks of the flu in the USA [5].

Data donation can contribute significantly to fighting the novel coronavirus SARS-CoV-2 and the respiratory disease COVID-19 both today and in the future. The increasing amount of data on coronavirus (e.g. symptoms and disease progression) might someday lead to new scientific findings. People can continue doing their part by donating data to research. At all times, future solutions for data donation must be voluntary, maximize data protection, and guarantee personal rights. Chaos Computer Club shares this view on data donation and recently published 10 guidelines for evaluating corona tracing apps [6]. The majority of these recommendations is also relevant to other apps, which use health data to fight coronavirus.

What does the German population think about data donation?

According to recent studies, most Germans are willing to donate data. Nearly 80 percent of the population said they would agree to donate their data for research purposes. In this context, the TMF (Technology and Methods Platform for Networked Medical Research) commissioned a Forsa survey with over 1,000 participants [7].

Overview of survey results from summer 2019:

  • 79% of participants agreed to donate their health data for medical research purposes.
  • 97% would support publicly funded research using their data, 17% would share their data with scientists from the industry and private companies.
  • 73% agree to long-term use of their data following data donation (56% for an unlimited period and 17% percent for the next five years).

Furthermore, the survey showed there are no major differences in willingness to donate between chronically ill and healthy people or between people of different ages – participants aged 18 - 29 gave similar answers to those aged 60 and over. This demonstrates that concerns about data donation are not based on age or health. The German Ethics Council has now taken on the task of identifying the causes for reservations concerning data donation.

The German Ethics Council: opportunities and risks of big data in medicine

The German Ethics Council, an independent council of experts tasked with pursuing medical and legal issues and the likely effects on individuals, is also dealing with the topic of health data and advancing digitization. The 26-member committee believes that developments in big data and medicine offer great opportunities [8]. These include improved diagnostics, advanced therapy measures and the opportunity for individuals to actively pursue personal health targets. The Council has also identified challenges regarding the implementation of data protection law and the merging of data that has been acquired by different means and in varying quality. It stresses that efforts must be increased to coordinate, regulate, and process data. Electronic health files, as central storage locations, make it possible to align and standardize this data in order to draw conclusions from it. If the technical requirements are met and people are fundamentally willing to donate data, the only question that remains is how to motivate them to actively participate.

Reasons for data donation

The question of what motivates people to donate data is closely linked to their understanding of corresponding benefits – both for themselves and others [9]. Purely considering the prospect of valid research findings and improved treatment options, it is worth highlighting possible reasons for donating data. 

German willingness to donate data to corona research

In April 2020, Data4Life conducted a representative survey of 5,002 participants in Germany. The survey results showed that nearly two thirds (65%) of participants were willing to donate personal health data (e.g. pulse, fever, previous illnesses) and movement data (e.g. location, social distancing measurements) to COVID-19 research. Over three-quarters (77%) of those willing to donate personal data would do so to support the containment of coronavirus, while almost two-thirds (65%) would want their donation to accelerate the development of a COVID-19 vaccine. The number of participants interested in donating data to ease COVID-19 lockdown measures was significantly lower – only 26% would donate for this purpose.

Solidarity and charity

Even though diagnosis and treatment is always personalized, medical data can benefit the general public tremendously. This information can help draw conclusions about disease patterns, recognize statistical clusters, and develop new treatment methods. Improving healthcare for the entire population depends on active involvement of individuals.

Shared responsibility as motivation for donating

According to the United Nations Universal Declaration of Human Rights, every individual has the right to contribute towards scientific projects [10]. However, this can be rather difficult or even impossible to achieve in everyday life. Donating personal health data provides an opportunity to access this basic human right.

There are good reasons to donate data, it’s generally accepted by the German population, and the benefits are undeniable: How do we achieve greater awareness? A look at international efforts may provide some answers.

USA embraces data donation

In the United States of America, various actors in healthcare have been working to increase the population’s willingness to donate data. Clearly their efforts have been successful, since a 2014 study in the USA revealed that 94% of the participants would donate health data to support scientific endeavors [11]. The respondents were especially interested in donating data to help cure diseases more quickly. An important prerequisite for this was that data remain anonymous. However, anonymity was not the condition. A transparent approach to the use of donated data and detailed information on the different types of data donation are also essential.

What is the difference between public and private data donation?

The way in which data is donated determines who has access to the information. If an institute or company is pursuing a specific research goal, they might need access to data from a predefined group of the population. Alternatively, a large pool of freely available data could be used for an unlimited period of time and various topics.

It’s important to distinguish between two groups:

  • Private data donation: This is the most common type. Access to specific data sets is only possible for a selected group. It is often subject to a time limit.
  • Public data donation: This type of data donation necessitates a public license. One advantage is that multiple parties can access various data sets simultaneously.

Challenges of data donation

One of the greatest challenges of data donation is that the German population is not particularly familiar with the term itself or the types of data donation. However, the Forsa survey mentioned above clearly indicates that people are willing to donate when actively approached on the subject.

Furthermore, donating sensitive health data requires a high degree of trust. Repeated breaches and violations of data protection regulations, for example by social media, have undermined the trust of the general public. A trustworthy approach is top priority when it comes to encouraging as many people as possible to donate data. 

This includes, among other things, legal and technical safeguards to ensure data is not passed on to unauthorized persons. Giving patients the power to decide who has access to their data,  when and for how long, will also increase trust.

In the coming years, supporters of data donation will be faced with the challenge of  building trust and raising awareness on these issues. Improving data protection and making these procedures more ethical will encourage people to embrace data donation as a new method for gaining medical findings. If this is successful, it could give researchers access to vast quantities of data and help people in the future live healthier lives.

Sources

[1] https://www.deutsche-alzheimer.de/ueber-uns/presse/artikelansicht/artikel/neues-informationsblatt-der-deutschen-alzheimer-gesellschaft-alle-100-sekunden-erkrankt-in-deutsch.html

[2] https://www.igd.fraunhofer.de/presse/aktuelles/entspannt-gesund-die-smartwatch-als-diskrete-gesundheitsassistenz

[3] https://www.medizininformatik-initiative.de/de/deutliche-mehrheit-der-deutschen-bereit-zur-datenspende-fuer-die-medizinische-forschung

[4] https://corona-datenspende.de/ 

[5] https://www.thelancet.com/journals/landig/article/PIIS2589-7500(19)30222-5/fulltext 

[6] https://www.ccc.de/de/updates/2020/contact-tracing-requirements

[7] http://www.tmf-ev.de/News/articleType/ArticleView/articleId/4456.aspx 

[8] https://www.ethikrat.org/fileadmin/Publikationen/Stellungnahmen/deutsch/stellungnahme-big-data-und-gesundheit-kurzfassung.pdf 

[9] https://link.springer.com/chapter/10.1007/978-3-030-04363-6_3 

[10] https://www.un.org/en/universal-declaration-human-rights/ 

[11] https://nam.edu/wp-content/uploads/2015/06/VSRT-PatientDataSharing.pdf

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