Welcome to the Playbook for Health Data Sharing Ecosystems#


This playbook is a practical guideline for small and medium-sized enterprises (SMEs) wanting to learn more about sharing and re-use of health data.

The objective of this playbook is to facilitate data sharing and ecosystem creation, to enable the use of novel (e)health technology and services as well as to enhance scientific research in health related questions. (e)Health data drawn from health data sources, such as hospitals and personal wearables, are arguably one of the most valuable and sensitive types of data. The value of this type of data is the potential to support research and facilitate product development within healthcare, digital health, public health and many others areas. However, this data is highly sensitive since health data reveals personal information about one’s health conditions, family members, ones psycho-social state and history.

This report aims to support companies steer towards an ecosystem that allows its members to share insights from health data under the appropriate legal, ethical and technical constraints. All these necessary foundational elements making up a health data ecosystem will be touched upon in this book. This playbook is a dynamic resource that will change over time, and will be updated on a regular basis. All changes are publicly accessible through the commit log, through which references can be made to specific versions of the book.

For whom#

The guidelines provided here aim to help those wishing to share and re-use health data. It consists of information and resources with references to the state-of-the-art in the scientific community, as well to provide practical advice and available solutions to further investigate. This playbook is written for those interested in learning more about the major themes concerning health data sharing and re-usage.

  • For CTOs, data scientists and managers, researchers, software developers and policy makers.

  • For organizations depending on access health data for their services or products.

  • For companies wishing to innovate in the health space (re-)using health data.

  • For hospitals or other primary care institutes that would like to facilitate scientific research or collaborate with business.

How to use#

This playbook can be traversed using the navigation bar to the left, where the individual chapters and sections are linked. Any page can be freely bookmarked and will return you to the page you were. In addition, at the bottom of the page you can switch to the previous or next page. Finally, there is a search bar available that can be used to search for specific terms across all pages.

Content#

The playbook is developed around four important themes that may be addressed separately within the playbook. The major building blocks for health data ecosystems are as follows:

  • Common data sharing methods

  • Principles of data reuse

  • Privacy enhancing technology

  • Legal guidelines

Note

You can navigate this book by using the menu to the right, or by flipping pages at the bottom of each section.

Value of this playbook#

Data in the digital health space is scarce and hard to come by. Some data may not even be replicable, such as pandemic data. Sharing data in a secure and privacy-preserving way is challenging and this playbook will guide you through this topic.

Why share health data or models? Acquiring and storing data can be expensive, building models can be time consuming or dependent on external sources. Reuse and sharing of existing data means a lower operational overhead and a more sustainable data strategy.

The principles discussed in this playbook not only will make your data and models more manageable, but also increase its value by increasing the scope of possible applications, speeding up data exploration and encouraging reuse of other existing data sources.

Other sources#

Many other organizations are active in the field of health data reuse and ecosystems. A selection of these is listed here:

Health data sharing in practice#

Even though large scale adoptation of health data ecosystems is yet to be achieved, there are numerous examples of projects that have achieved and succesfully demonstrated safe, reliable, secure and ethical sharing of health data (insights) in an ecosystem setting. Some examples can be found here:

From theory to practice.

To get a glimpse of the possibilities that are enabled by FAIR data, see this article on privacy-preserving data analysis presented by TNO.

Call to action#

Reusing health data is not an easy task. And setting up an ecosystem is not something done alone. We can help! TNO is active in many public-private partnerships and other collaborations with SMEs to setup health data ecosystems. We are actively looking for new partners in these and new projects.

Reach out!

If you want to learn more about setting up a data ecosystem or would like to explore a partnership with TNO, reach out to Andre Boorsma, Robin van Stokkum or Elena Lazovik. If you would like to contribute to this knowledge base or would like to develop a knowledge base for your organisation, contact Ruduan Plug.