“MHR-as-Imagined” vs “MHR-as-Done”

A little while back I wrote a post on my early experiences with MyHealthRecord (MHR), discussed its strengths and weaknesses, and made some suggestions for improvement. At that point, it was still opt-in, but on July 16th a three month phase in period started whereby people can opt-out, before an MHR is created automatically for them. In the lead up to that date, and in the time since, MHR has been the subject of some robust discussion on both mainstream and social media. While the concept itself has been generally well received, there is significant controversy and debate over numerous aspects of the system, the legislation underlying it, as well as the government’s handling of the roll-out.

As anticipated in my earlier post, a lot of the discussion has been around privacy concerns. But not in the way I thought it would. My earlier discussion on patient privacy was primarily related to illegal access or “hacking”. While this is a legitimate concern, as highlighted by the recent hacking of Singapore health data, the transition to the opt-out model has brought to light a number of issues that I wasn’t previously aware of and that definitely warrant further discussion and clarification. A lot of it revolves around legal “secondary” use of the data, as well as potential access by other parties including police, insurance companies and even medical indemnity providers. There are also significant concerns about the opt-out process itself and informed consent, or lack thereof.

It appears that the government is hoping to use MHR for a lot more than people, myself included, had been led to believe. Instead of it just being a “Patient Controlled Electronic Health Record”, which is what it was originally called, it now appears they intend to use the data within it for all manner of other purposes. Many of these “secondary uses” may well be justified or even expected. However, they have essentially presented an all inclusive package without much publicity or explanation, and then made public statements that don’t really match up with the wording of the legislation, and have only provided a three month window to opt-out or otherwise end up with a record that will be hard to erase completely. It’s little wonder people have responded in the way that they have. Unfortunately, this may have caused irreparable harm to what I think is still a good concept.

I won’t go into depth about the many concerns that have been raised at this time, but I’ve included some links and tweets below that you can follow to helpful discussion on some of these issues. The controversy has also raised numerous ethical and philosophical questions, the answer to which impacts how one will view the various features, problems, and policy decisions related to MHR. I may well do some Twitter polls touching on some of these and see what discussions result. Given this is still very much a live issue, it’s likely I will add additional articles or Twitter threads as they come to light and at some point, I might combine it all into a separate blog post, so you may want to come back again and check for updates.

In terms of my own decision, I’ll continue to use MHR for the time being. I have a complex medical history, and I have already benefited from the system. I’m also in the fortunate position where there isn’t any information in there that I’m concerned about being made public. Indeed, a lot of me medical history is already in the public domain via Twitter, Facebook, news articles and presentations i’ve given.

Furthermore, by continuing to use the system myself, I will be in a better position to provide feedback on it, highlight concerns, and suggest changes. I’m even relatively blasé about the secondary use issue. Since my diagnosis with melanoma, one of my philosophies has been “Don’t waste your cancer”, and I would love it if researchers and other patients can benefit from the data my illness has produced.

But I’m much more reluctant now to recommend the system to others. There needs to be significant changes before I could regain my enthusiasm.

As a bare minimum the government needs to extend the opt-out period to allow for further discussion and clarification of the issues raised.

Better still would be to strip it back to the original concept of a patient controlled control electronic health record, remove the secondary use components, provide the same legal protection as a standard medical record, and focus on improving usability and inter connectivity. Then, once, or perhaps if, trust with the public has been re-established, we can start a conversation on how best to develop the system and use the data it contains in order to improve the efficacy and efficiency of medical services.