Among the great healthcare advantages of a PHR, there is a push of a story where Patients with privacy concerns can choose to not participate in Health Information Exchanges, while still providing access to their data. My concern with this is that there are a small number of people that can pull this off. Most will fumble around like they do with facebook today. There are a large number of consumers that are simply not good at protecting themselves. This does NOT reflect on their desire, they want to do the right thing. But the Internet is a difficult thing. There is a large number of individuals that are still not using the internet today, and this population needs the most healthcare and most urgently.
That said, I think a PHR is a powerful tool that MUST be considered when we look at Meaningful Use, Health Information Exchanges, and the improvement of Healthcare. I have spoken about this in the past Re: Personal Health Records May Not Be So Personal and Personal health records most likely to be used when doctors recommend them. There are a few more notes on how a PHR can and should be considered a full member on a Health Information Exchange (HIE). I hope to participate in this roundtable, but at this point only web participation is available.
The Office of National Coordinator for Health Information Technology (ONC) will host a free day-long public Roundtable on "Personal Health Records — Understanding the Evolving Landscape." The Roundtable is designed to inform ONC’s Congressionally mandated report on privacy and security requirements for non-Covered Entities (non-CEs), with a focus on personal health records (PHRs) and related service providers (Section 13424 of the HITECH Act).
The Roundtable will include four panels of prominent researchers, legal scholars, and representatives of consumer, patient, and industry organizations. It will address the current state and evolving nature of PHRs and related technologies (including mobile technologies and social networking), consumer and industry expectations and attitudes toward privacy and security practices, and the pros and cons of different approaches to the requirements that should apply to non-CE PHRs and related technologies.
Public comment will open at the beginning of November.