incentives

Things to watch at Strata Rx: 5 underlying challenges for sharing health data

Submitted by speyer
on Tue, 10/16/2012 - 06:37

This week brings us the first Strata Rx conference, which explores the role of data and data science in health care. Very timely, because health care is at a crossroads. In many more developed countries, rising cost combined with stagnating outcomes and aging populations make health care systems unsustainable. In less developed countries, a dual or triple disease burden and stagnating development assistance for health hamper progress. Tim O'Reilly said in a recent conversation on health care (worth watching!) that "change happens when the pain of not changing is greater than the pain of changing". Health care is there, ready to be disrupted, and data is key to driving that disruption. It's one of our biggest challenges in the 21st century. 

Changes in technology have revolutionized the possibilities for collecting and analyzing health and health related data (sorry about the buzzword bingo): patient data are captured in electronic health records, smart phones capture and transmit volumes of personal data, social media capture health self-assessments, wearable sensors enable uninterrupted data collection and transmission, genome sequencing is now almost affordable, and cloud computing, open source software, machine learning, and big data management enable sophisticated analysis of all these data. With all these opportunities, leveraging health data to fix health care is not only one of the biggest, but also one of the coolest challenges in the 21st century.

However, there are 5 underlying challenges for leveraging data to fix healthcare which center around transparency and accessibility.

  1. Privacy:  sharing data about individuals requires protecting their privacy. However, there is an inverse relation between the availability of identifiers and the usefulness of the data. In addition, linking data from different sources enables much more powerful analysis but also increases privacy risks. When sharing useful health data, there always remains a (often very low) risk of identification. Therefore, we need strong de-identification techniques as well as powerful legal deterrents from using data to identify individuals. And we need to create trust in individuals that their data are handled responsibly.
  2. Consent: individuals need to agree that their data are being shared with others. They should be able to decide exactly what their data can be used for, and be able to remove that consent if they wish. Currently, there is limited transparency and very little control for patients over how their data are shared.
  3. Data Use Agreements: fully de-identified data (i.e. data with a very low risk of identification of individuals) should be shared as open data. Data with identifiers can be shared as limited use data for appropriate uses and with data use agreements. However, there are currently no standards around these kinds of agreements and their stipulations, making it often difficult to negotiate and implement them.
  4. Research ethics: research that involves collecting data from individuals or using data with direct identifiers often require ethics oversight, e.g. by Institutional Review Boards. Regulations like the United States' HIPAA detail what can be shared and how. While this oversight is necessary, it often hampers progress by being too strict and difficult to implement. Regulations and their interpretations need to keep pace with the current rapid developments in data collection and analysis, the globalization of research, and individuals' attitude towards data sharing, e.g. in social media.
  5. Incentives for sharing: there are powerful arguments for sharing. Open data can create entire ecosystems. Sharing unlocks external creativity and analysis, and most of the world's smartest people don't work for you. Most importantly, sharing and using health data can save lives, so sharing data becomes a moral imperative. However, many reasons beyond privacy and consent keep data owners from sharing data: competition, fear of misuse, reluctance to share the power of information, political agendas, academic publication plans, etc. The fragmentation of  health systems compounds the number of different players that have a plethora of different motivations for not sharing health data. We need better incentives and frameworks to encourage and facilitate data sharing. Patients can take a lead role here by sharing their own data and requesting providers and others to share their data responsibly.

The next two days will touch heavily on these areas, and I'm looking forward to connecting with other health data innovation enthusiasts. Follow me on Twitter for instant updates, and stay tuned for follow-up posts.

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10 key ingredients of health data innovation

Submitted by speyer
on Thu, 09/13/2012 - 21:57

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.
  1. Provide individuals with access to their own data and ensure their authority over other uses of those data
  2. Maximize the quality of data, metadata, and documentation, and adhere to standards where possible
  3. Make fully de-identified data publicly available as open health data at the highest level of detail possible
  4. Use restricted access mechanisms for data where individuals can be identified
  5. Make it easy for data users to find and use relevant data
  6. 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)

  1. 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

  1. Create incentives (financial, academic, and other) and requirements (regulatory or tied to funding or publication) for data holders to share data
  2. Create and enhance the regulatory framework to facilitate data sharing
  3. 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.

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