Although many programmers and public interest advocates come to the concepts of free software, standards, open data, and transparent institutions out of idealism, modern businesses and governments are being driven to these same solutions out of the practical need to meet high expectations with diminishing resources. The ways in which the health care field has been incrementally adopting these paths are the subject of a new report, written by me and released by O'Reilly Media, called The Information Technology Fix for Health: Barriers and Pathways to the Use of Information Technology for Better Health Care.
From the wrists of fitness geeks to the pipettes of genetic researchers, data sharing is becoming imperative. Many don't recognize it yet, but The Information Technology Fix for Health outlines the incentives for open solutions in devices, public data sets, clinical research, accountable care, and personal health records.
I wrote this report because I saw a lot of health reformers championing change without acknowledging the technological difficulties of achieving it. I wanted to explain the actual state of current health IT technologies--such as standards, EHRs, and open source software--and help readers see how far we still have to go before we can achieve our dreams. As an added challenge, I try to show the intricate relationships between the technologies and the ways they need each other. Although I skirt most policy issues--preferring to focus on technology--I highlight some of the ways technology and
Although readers of Open Health News have plenty of experience with the arguments for open data, open health, and open standards, I think you'll appreciate the step-by-step way my report brings these in as inevitable to improving health. Some of the calls to action woven into the report include:
The report retells some of the familiar complaints about electronic health records: the errors they cause through poor interfaces and slow responses, the degree to which doctors hate them, the walls erected by vendors against reporting bugs and taking responsibility for them.The report then lays out some attributes of a solution, including more agile development, a deeper engagement during system development with the doctors and others who will use the systems, and more transparency about errors. The report also points out that every site using an EHR has to customize it, and that with proprietary vendors (including Software as a Service) the challenge can range from expensive to impossible.
The stage is then set for a defense of free software as the best way to develop an EHR. The report mentions some popular existing projects, and suggests that the health industries have strong incentives to develop free software in order to improve their operations and bottom lines.
The report unites two issues that have often been discussed separately: the failures of health information exchange, and the silo-ing of data from devices such as popular fitness tools. After laying out well-known reasons for facilitating HIE, and pointing out that devices will never be used for serious medical interventions until they can be integrated with each other and with EHRs, I call for light-weight standards.
I briefly mention the new RESTful protocol developed by HL7, called the Fast Healthcare Interoperability Resources (FHIR), but point out that it represents just the common data in EHRs and does not embrace patient-generated device data. I also cite some advantages of data sharing in clinical research.
I also recognize that other problems hold back devices from wider medical use. Their accuracy is suspect, given that different devices on the same person can produce different output, and both the clinicians and the payers will demand more proof of safety and efficacy before endorsing their use for diagnosis or treatment.
The movement to give patients control over their data (made famous by the Gimme My DaM Data) is the ultimate expression at this point of openness in data.
When patients hold data in their own repositories, lots of good things come to life. They can determine whom to release data to and control which fields to release (data segmentation, a long sought expansion of EHR capabilities). Although this may seem to hold back legitimate research, patients who feel they are in control may well learn more about the benefits of research and open up more of their data. They can also correct errors, incorporate the data from health devices, and participate in communities where people support research projects they choose with data from their records.
The report is divided into four major sections:
There is an agenda behind the ordering: everything leads up to patient empowerment, which I define to encompass patient ownership of electronic health records. This will permit innovations on many levels--such as the incorporation of patient-generated data into treatment plans, and the wider sharing of personal data securely with researchers--and hopefully drive transparency in other areas of health.
I'm looking forward to hearing from readers and seeing other articles and blog postings that comment on the report. If you want to comment to me privately, or suggest ways to promote the report, please write to the infofix alias @ the oreilly.com domain.