One of the authors of the article and former colleague from Group Health Cooperative, David Grossman, MD, tipped me off to its publication, and I’m glad he did.
This piece adds to a growing volume of work that doesn’t ask “why?” patients should have online access, but work that asks “why not?” for patient online access. Unfortunately, the peer reviewed literature lags significantly behind what is known in the world about patient online services – it points to some of the deficiencies of peer review in a Web 2.0 world that I an others have written about previously.
One disclosure is that I am an acknolwedgee and was one of the individuals interviewed by the author, although I was not involved in any significant way in the content or conclusions reached by the author.
The article covers online patient access for a vulnerable population, teens, and the author makes an astute observation about their vulnerability in today’s health system, which parallels their vulnerability in online health systems:
Adolescents, as a group, do not typically advocate on behalf of their own health care needs, and generally are not the primary subscribers on health insurance plans. As a result, teen needs may not be among a health care organization’s highest priorities.
From my experience, many of the online programs that exist for adolescents are there because of the support of a handful of dedicated pediatricians and family physicians as well as their nursing and allied health colleagues who care for this group. That’s changing, though, as parents who enjoy this access for themselves are asking how their entire family can participate.
There’s a very nice table in the article about what, specifically, leading edge organizations are doing to provide teen access. This table alone should serve as a guide to understand what conventional limitations are. However, I would stress the word “conventional,” because as the authors point out, much more should be possible in the care of adolescents, so organizations out there looking to implement teen access hopefully would use this information to provide even more service – this is the foundation of innovation after all!
In addition to the useful summaries of potential beneficial uses of teen access, the article includes a fairly good review of the benefits of personal health records in general.
The other thing I liked (and like in any article like this) falls into the category of what I call “myth explosion,” which is where a critical eye is applied to assumptions made about how things might work if some thing new is tried. (In my LEAN work, I used to say, “not everything has been tried before.”) This includes concerns about parents coercing teens to provide passwords to their online health information, which is successfully challenged as a concern, in my opinion. Beyond thoughtful analyses like this, I think patients and their families are the best at myth explosion and do it quite readily. With that in mind, a great follow-on to this article might be one written about the experiences of teens and parents involved in the adolescent access programs now underway.
The one other idea that comes to mind is the fact that the recent HIPAA guidance put out by the Department of Health and Human Services has no information in it regarding adolescent access. I think it might be useful for the next chapter of that guidance to include this group, to make something that seems difficult to so many not seem so.
Thanks to Megan Moreno, MD, for her work to change the question from “should we?” to “how and when?” Hopefully, soon. If there are any teens or parents out there using this access or want to use it, please feel free to comment on your experience as it is or as you would like it to be.