Patient disclosure directives – a headache for Engineers?
Many shared health record systems that are being deployed today provide patients with some way of declaring disclosure directives to limit the distribution of their personal health data. The Acting Privacy Commissioner of British Columbia has just issued a report that points out that more must be done to protect this very sensitive data. In a recent letter I sent to the Times Colonist, responding to their coverage of the commissioners report, I have pointed out what BC citizens can do right now to protect their shared health data. I have talked about the issue of consent directives and patient controls on data disclosures with several co-researchers and practitioners. It seems there is a general feeling that these kinds of mechanisms create a lot of “headaches” for software engineers. I am wondering why this is so…?
Jens
I have been around many tables talking about disclosure directives. I think one of the challenges here is that different people talk about different parts of the elephant. That is, they focus on one aspect vs another aspect and so are talking about different things.
People want to get privacy “right. However, privacy cannot be “right”, it is complex and is always a balance between privacy and access. It is variable based on the person and the context.
It is hard, very hard, to move a discussion from “let’s get this perfect” to “let’s get this better” for some people, but this is what needs to be done.
I have had some success in visualizing (prototypes) various disclosure directive models to highlight pros and cons, but this does not always stick in people’s memories, especially when new people come into the large mix, such as at a provincial, state or national level.
— Morgan
priceless
13 Jul 10 at 6:14 am
Most of the headaches I have seen from disclosure directives concern difficulties in integrating them into clinical work processes. For instance, resource requirements, training, interference with ‘break the glass’ mechanisms, politics, concerns over timely access to data. I’ve never heard anyone construe it as an engineering problem.
To give but one example, one of our senior project managers here (a nurse by background) said that the technical issues involved in supporting consent directives in an EHR are not the issue. It is the process issues.
James
26 Sep 11 at 9:21 am