Several years ago the World Economic Forum observed that personal data was becoming a “new asset class” while big data and data mining tools have come to the forefront as promising business and research tools as well as threats to individuals’ privacy. Health systems are struggling to come to terms with new business models that reimburse providers for improving outcomes rather than strictly based on volume-based care. This means that the place of health data in health systems is changing rapidly and becoming much more valuable. Citizens are slowly beginning to realize that they have rights to data and ownership of data in areas where companies have historically owned and/or controlled the data. In some contexts we also see interest in reframing access and control over health data in human rights or civil rights terms.
Interoperability of technologies is becoming a regulatory imperative to improve data liquidity and care coordination for patients and more patient-centric care. Open data has become a mantra to drive innovation and new citizen-friendly tools for navigating health systems, enhancing citizen empowerment and privacy. Meanwhile, new predictive engines for health outcomes have been developed that use consumption or retail data, not just health data, to predict health outcomes. Clinical trials for new drugs are also expanding the range of types of data collected to understand how drugs work. For some critics it appears that everyone profits but the patient.
healthbank is a new health data transaction platform that aims to put the citizen in greater control of their health data and offer mechanisms for citizens to also profit from sharing their data while contributing to public goods such as clinical research. It is widely accepted in policy circles that health data policies are not keeping up with technology development and increasingly we find citizens wanting to be at the table in these policy debates. The healthbank Health Data Lab will be a forum to bring together the best minds, technology companies, healthcare entities and researchers, and patients-citizens to create new knowledge networks that can affect change so that citizens benefit from the uses of data more widely and innovative health services, bio-pharmaceutical products, and policies can better serve all stakeholders. The Health Data Lab will contribute original research and activities that catalyze innovative uses of health data around emerging public health and medical challenges. We will also create forums in person and using social media to encourage thoughtful debate and exploration of solutions to the most pressing policy challenges. One of the most important objectives is to create dynamic, learning networks of diverse stakeholders to advocate for novel policy and technology solutions to existing and emerging problems.
Below we provide some examples of the initial activities we plan on exploring:
- Citizens sharing data: what are the ethical issues when more citizen-generated data is combined with formal digital health record data and citizens become more active in sharing data? What are the promises and pitfalls and what can we do with technology platforms to protect privacy and security and what additional issues emerge? How can we facilitate more sharing of data for health and medical research efforts that contribute to public goods? What are the ethics of incentives and behavioral economics and the corresponding policy frameworks to encourage engagement?
- What are the innovations in new forms of consent that are more readily understood by patients plus provide them with more control over when and how their data is used? Some critics suggest that some forms of bioethics are unethical and need to be rethought to address emerging norms, social problems and technologies. What frameworks can we develop to guide policy-makers in the era of big data and growing security threats?
- Health Data Cooperatives: What role can coops play in more citizen-centric approaches to protecting privacy as well as health equity of who benefits from research? What role do business models and organizational innovations play in building trust and democratic decision-making over who controls our data? Open data and the intersection with personal health data: What tools are emerging from open health data and how can we encourage citizens to engage with platforms without compromising privacy? Can we develop a “Consumer’s Reports” for citizen-centric health data sharing and apps?
- Wearables and the IoT are becoming a rapidly growing part of the health technology ecosystem and will play an important role in disease management efforts and an important source of health data in the coming years. New advances in materials sciences are creating smart fibers, fiber batteries and embedding circuits in the clothing that we may wear someday. Biodegradable wearables are also on the horizon. But what happens to the data in disposable wearable technology? Some studies of wearable makers suggest that privacy policies are weak and more work needs to be done with the apps. How can we map emerging security and privacy issues when sensors are pervasive in the home and the environment and develop mechanisms to protect privacy and build trust from the consumer perspective? Are there ways that collaborations between health bank and wearables and IoT companies could become a norm and enable better protection and opportunities to share data?
- Blockchain technology and Healthcoins: Blockchain promises a new way to offer advanced privacy and security standards but also radical transparency in health system transactions and ways of sharing data. This technology is distributed network-wise and may prove disruptive to many existing technologies for storing data. Where is Blockchain going in the broader economy and how can we prepare for what many are calling the next major phase of technology development after the mobile revolution? Can Blockchain scale to integrate genomic/microbiomic data, patient-generated data and the IoT and render data in a form more readily available for analytical purposes? Are HealthCoins (health version of Bitcoin) a viable mechanism for rewarding behavior and paying for healthcare products and services? How are the norms regarding compensating participants in trials changing so that the social contract is enlarged to include more direct gains for participants who take the risks for medical research?
- Algorithmic Ethics: Algorithms built on top of health databases are becoming the norm across clinical care and even patient-focused applications. But algorithms and probabilistic thinking also have limitations and too heavy a reliance on algorithms also has negative implications for research, clinical care and self-care of disease states. There are some tensions between notions of evidence-based medicine and personalized medicine that are becoming apparent in how physicians adopt new algorithmically based tools. These tensions also spill over into the physician-patient relationship and we may need to develop different ways of framing technologies so that health data and research can better serve the needs of both physicians and patients. Can we map the ethics of healthcare data analytics to identify weak links in the health data value chain where additional checks are required to improve health outcomes and quality of care and how do we work with communities of technologists and industries to address these issues?
- Patient-Powered Networks and Data Politics: Patient networks have been effective lobbying and support groups for several decades and continue to grow. In the era of big data and the growing interest in health data how can the effectiveness of these networks be enhanced and what are some of the challenges they face as well as conflicts that are emerging with the commodification of health data? Can we develop standards for partnerships and engagement that facilitate transparency and equity?
- Building the health data commons as a public good: Having the technologies to analyze the growing velocity, volume and variety of data is powerful but what mechanisms can be used to enhance citizen engagement with data when the average person is barraged with stories of compromised data and identities? Open access journals and databases, open science protocols and new data commons can be created to catalyze innovation but will necessarily have to confront these issues. MIT data scientist Sandy Pentland is calling for a “new deal on data” which could be a useful framework for supporting the health data commons. What are the channels for improving citizen engagement with these efforts and in the process democratizing health research and the types of research questions studied?
We will be pursuing these questions and others while offering applied solutions for action. In essence, we are an ideas lab leading to applied action where the health bank platform can add value to the tremendous amount of health data that grows daily.