Planning the Future of Digital Health
Last week at National Harbor, Maryland, I and about 500 others from around the world gathered at the Global Digital Health Forum 2016 to talk about ways in which digital technology is being used to improve the efficiency of health information systems and improve health overall. In particular, my eyes and ears were tuned to digital health data ethics, security and confidentiality because my organization, MEASURE Evaluation, plays a role here and because this is a concern essential to effective harnessing of technology that needs more attention.
There are a couple of realities that lead to this concern. One is that many digital health solutions are not created by government health systems but by large funders and, therefore, are typically designed to meet a single—frequently disease-specific—need and are not interoperable. A second concern is that data ethics, security, and confidentiality are difficult for low- and middle-income countries (LMICs) to safeguard: the regulation isn’t there, the financial resources aren’t there, and the capacity to manage ethics and security isn’t there. Finally, data are vulnerable to loss or compromise from cyber criminals. If proper safeguards are not put in place, tampering with patient data could erode patients' trust in the system.
Having attended the conference with these concerns in mind, I came away with three chief thoughts. First, several sessions included discussion on data ethics and security and LMICs report they are struggling to find the right answer. In addition to lack of capacity, data privacy laws are nowhere close to addressing the current and emerging digital data issues and, currently, there are not many tools available that LMICs can adapt.
Second, there is an increasing demand from LMICs to move away from funder-driven digital solutions and organize their health information systems through enterprise-wide architecture. Enterprise architecture creates a national structure in which the country’s information system can be rationally organized. It has the potential to bring order in a field crowded with non-government entities who, heretofore, have not followed an agreed-upon structure. There is now general agreement that to build a strong and responsive national health information system—digital or otherwise—such a structure must first be established.
Third, I spoke to at least two individuals from different organization at two different times who asked me if I MEASURE Evaluation or any other group has conducted any studies on the effectiveness of digital health systems in LMICs. Among the many presentations made in this conference, I found not even one that specifically addressed evaluation of digital health systems or solutions. This points to a growing interest for tools and methods to describe the contribution of digital health systems to health outcomes.
It seems clear that funders need to work within national systems, not parallel to them. It seems clear also that funders can assist countries to establish regulation and security for digital systems, but that they also must build capacity within a country to maintain those safeguards. And, it is quite clear that the time is ripe to evaluate the systems we have so we can learn from what is working so we build in a more systematic and evidence-informed way for the future.
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