Making it Possible for Doctors to Trust your Electronic Health Data

Jamie Ferguson raised a number of important issues in his posting here titled Can Your Doctor Trust Your Electronic Health Data.  As Jamie points out, the question is whether physicians will trust and use dynamically generated health information aggregated from multiple sources. There are two different responses to the issues Dr. Ferguson raises, the first is a technical/social one, and the second deals with aculturation.

Technical/Social Solutions
My first response provides a technical solution that takes advantage of existing methods to engender trust from healthcare providers.

The composition of information from multiple sources has a long tradition in healthcare, especially clinical research.  It's hard to find a report on evidence based medicine that doesn't claim 20 or more sources for the statements made in the research report.  Each of these statements is clearly marked and a reference to the original work is included. 

These days, the lack of references in a published report is commonly used as an initial indicator of low quality research. Thus it engenders a low level of trust from the readers. Elsewhere in technology, Wikipedia has a BOT that checks articles to see how many (or few) references that they cite. This application marks articles that fail to meet the quality goals of the WikiPedia site. The original Google search engine premise is that the more links there are (links = references) to an article containing the search keywords (especially when the linking article also contains them) the more likely it is to be relevant (trustworthy) to the user.

Ideally, when research reports are published electronically, these references are "hyperlinked" to a location where the referenced content can be retrieved.  Sometimes a unique identifier, such as an ISBN number (for a published work) is included, which makes it easier to retrieve from a library, or order from a publisher. Either of these mechanisms enables the reader to verify (some more quickly than others) that the original statements being referenced are not taken out of context.  However, the mere presence of these references is often sufficient to provide a degree of trust.  This is especially true when other key information about the source is included that supports the case for trusting the information (e.g., a reference to a well known author/researcher, et cetera).

When HL7 developed the CCD specification, IHE profiled it in the PCC Technical Framework and HITSP developed the original C32 specification we spent a lot of time talking about this same issue. The CCD specifications provides several mechanisms to record the source of the information (either as the author, the informant, or a reference to the document from where it orginated). The IHE work simply refines the document reference a little futher, and the HITSP work makes use of these methods. The HITSP and IHE work go one step further for authors and informants, adopting constraints from an HL7 Implementation guide that ensures that authors and informants are reachable by the reader of the document. It requires that each author or informant represented in the clinical document have a name, address and telephone number. This enables the sources of information to be traced backwards.


So, a consumers personal health record, or an agregated record created by a providers HIT system can use these same concepts when reporting information about a patient's health. Aggregaged healthcare records can (and should) contain references to original clinical documents.  This will engender greater trust from healthcare providers, EVEN when the original documents are not immediately available.  The fact that there is an original, and that the source of the original is accessible or reachable (perhaps with some additional work) will provide an additional degree of trust in the aggregated information.

Aculturation
The second response is that the provider response to the sharing of agregated clinical information coming from the patient will change over time.  The initial levels of trust will be low, but as technology advances, providers gain more acceptance and experience with it, and additional methods are put into place to engender trust, more trust will come.  Look at the Internet, today, most people wouldn't think twice about entering the credit care information online, but ten years ago, this was a scary prospect.  Trust is not something one develops in a relationship overnight.  It takes time and nurturing to develop.  To get the time we need, we need to take the first step -- which is to be willing to try something new.