On July 27 and 28, the Institute of Medicine hosted a workshop series, Electronic Infrastructure for the Learning Healthcare System: The Road to Continuous Improvement in Health and Healthcare, sponsored by ONC. Here’s the agenda and the presentation materials.
The attendees included an amazing array of informaticians, professors, policymakers, scientists, and industry leaders.
I had the opportunity to serve as a panelist for Session 2: Technical strategies: Data Input, Access, Use and Beyond as well as to moderate Session 7: Perspectives on Innovation.
Here are few highlights from those sessions.
Technical strategies: Data Input, Access, Use and Beyond
Doug Fridsma (ONC) – We need a standards and interoperability framework that ensures accountability across the continuum of standards activities from business driven requirements to standards harmonization to implementation specifications to reference implementations to testing to certification. The National Information Exchange Model (NIEM) plus 10 RFPs from ONC will accomplish this. The RFP contractor selections will be announced in a few weeks.
Rebecca Kush (CDISC) – Re-use of data for multiple purposes is key. Rather than thinking of clinical research as a secondary use, we should put syntactic, semantic, and process interoperability in place with appropriate metadata and consent to facilitate data reuse for research with patient permission.
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
Jonathan Silverstein (University of Chicago) – Clouds are equivalent to remote hosting. Grids are equivalent to federated services. We should outsource complex and mundane tasks to cloud-based grid services providers to enable developers to focus on innovative functional modules.
Shaun Grannis (Regenstrief Institute) – The most important aspects of health information exchange are governance, value sets/mapping, and reassurance/trust in the community. Standards and use cases are not enough.
My summary of the five most important technical strategies for health information exchange:
1. There must be a business case for health information exchange. Meaningful use provides such a business case because stimulus funding depends upon it.
2. Policies must be developed in parallel with technology to build trust for health information exchange among stakeholders.
3. Standards for consent, vocabulary and especially transmission are a prerequisite for interoperability
4. There is a need for metadata describing the source of data, where in the workflow it was captured, and who captured it.
5. Persistent consent controlled by the patient will enable data reuse as long as good metadata is included during health information exchange to enable opt-in release of selected data for a particular purpose by stakeholders in specific roles.
Perspectives on Innovation
Daniel Friedman (Public Health Informatics Institute) – There are no good data sources for functional status/well being. We need creative informatics solutions to bring together data from disparate sources to support novel applications for population health.
Molly Coye (Public Health Institute) – We need decision support, comparative effectiveness data, telehealth to connect patients/providers, and cloud/grid computing services.
Michael Liebhold (Institute of the Future) – We need “event driven medicine” that combines data just in time to offer decision support to providers. Resource Description Framework (RDF) subject/predicate/object syntax provides us with a toolset to bring semantic interoperability to the web.
Matthew Holt (Health 2.0) – We need navigators/advocates for patients. Social networks are powerful ways to bring together patients, providers, and payers.
My summary of the five most important technical strategies for innovation.
1. Decision support service providers in the cloud will become increasingly important.
2. Novel sources of data including patient sourced data will enable innovative approaches to population health.
3. Event Driven Medicine will enable us to turn data into information, knowledge and wisdom.
4. Social Networking applications are more than just a idle chat. They connect intellectual property, people, and ideas.
5. Identity management – figuring out how to uniquely identify patients and those who need to access data is key to innovative applications.
A great conference. I look forward to the next workshops and the IOM book that will result.
