As a reader of this blog, you have already seen various aspects of health data innovation. This post starts a series of more concise overviews of its 10 key ingredients. If you have feedback or ingredients to add, I'd be happy to discuss.
Why do we need health data innovation? Rising health care cost are getting to unsustainable levels while health improvements are stagnating. Health data innovation aims to improve health and reduce cost through creative, scientific and entrepreneurial use of health data. The open data movement provides a great blueprint: share data, market the hell out of them, and encourage entrepreneurs, developers, and other interested folks to create transparency, accountability, new products and services, economic activity, and jobs. This benefits the innovators, but also the field overall and the data sharers themselves; weather and GPS data are good examples for this.
In the case of health, sharing data becomes vital in the truest sense of the word: data can save lives by providing evidence for research and evidence-based medicine, health care and public and global health. However, the fact that those data cover human subjects creates issues around privacy and consent that require a layered approach for data sharing. Privacy and rights of the subjects need to be balanced with broad data access for innovation. Facilitating access to health data is the responsibility of the data holder but requires consent of the individual (patient or healthy individual). Patients can request a copy of their health data and share those. And other stakeholders can create the incentives and frameworks that encourage health data sharing and innovation. The graph on the right provides a semi-structured overview of related key players, types of data and trends.
There are 10 key activities to create and foster health data innovation:
Holders of health data, including providers, payers, producers and researchers, should do what they can to make data available and get them used.
- Provide individuals with access to their own data and ensure their authority over other uses of those data
- Maximize the quality of data, metadata, and documentation, and adhere to standards where possible
- Make fully de-identified data publicly available as open health data at the highest level of detail possible
- Use restricted access mechanisms for data where individuals can be identified
- Make it easy for data users to find and use relevant data
- Contribute to a health data ecosystem that encourages innovation
Patients and healthy individuals play an increasingly active role in health data innovation, leveraging technology to access their health records and collect data about themselves (quantified self)
- Get individuals to share their own health and quantified self data
Other stakeholders like governments, academic journals, regulatory authorities, and funders can leverage their influence over organizations that hold health data
- Create incentives (financial, academic, and other) and requirements (regulatory or tied to funding or publication) for data holders to share data
- Create and enhance the regulatory framework to facilitate data sharing
- Create and foster innovation infrastructure by supporting entrepreneurship, technology, and education
Before I start going into details, let's pause. Do you agree? Are there ingredients / activities to add? Let me know in the comments or contact me.