My colleague and fellow PCHIT advocate and blog co-author, Joe Kimura, MD, of Atrius Health / Harvard Vanguard Medical Associates steered me to this article and asked me to take a look, which I am happy to do here for PCHIT readers:
I’m reviewing the article through the lens of my own experience using a version of the same patient portal product that UPMC is using, MyChart, produced by Epic Systems, Inc., although the paper does not explicitly mention what product they are using. I think this makes a difference in the interpretation.
The other thing that makes a critical difference in interpretation is the environment in which the product is being rolled out. I will get to that later.
The study encompasses the performance of ten focus groups involving a total of 39 diabetic patients who were portal naive and then portal experienced, as the groups were performed in two waves. This is excellent – a view onto the experience of a patient portal experienced patient is needed in the literature.
The other excellent thing in my mind is the voice of the patient throughout. I wish that the medical publishing industry would become Web2.0 savvy and allow authors to post video vignettes of the patients’ voices on YouTube or something similar. I give a presentation from some of Group Health’s focus group work, and the video is very powerful.
Think of this example:
When I start talking nutrition [with the provider]…it’s almost like I’m not saying anything r I’m just saying ‘blah, blah, blah.’ It’s like she’s not even listening at that point.
The picture I see here is a similar picture that I’ve seen in my experience – the opening of a patient portal opens up a discussion of the care experience. This is a discussion that has otherwise not happened previously. It can seem challenging to a health organization to hear this; however, I believe it’s the healthiest of organizations that listen and take this feedback to make the entire system better. This is what PCHIT does – it changes the conversation.
I am less clearly understanding of the conclusions, that non-use of the portal was associated with a better patient-physician relationship, and use of the portal was associated with an inferior patient-physician relationship. What I understand is that this might tie to a concept of the use of the portal to route around inefficiencies in health care. This has been well described.
What’s missing for me though is a correlation to the adoption environment in general, from an organizational perspective. Here are some questions that come to mind:
- What is the penetration among practices?
- How is it configured – will a patient reliably get their lab results when they log in?
- What is the workflow for messaging? (there’s a comment from a patient that her message doesn’t go to a doctor, only to a nurse, however in an another article, it says that physicians are involved in patient communication)
- How is the portal thought of an promoted in the organization and how is this reflected in the design and usability of the system?
I think these questions are critical. I come from a system where the PHR is designed to support a great patient physician relationship, is designed around that idea, and I have video from focus groups of our patients that tell this story – “My doctor is great – she/he uses these tools to take good care of me.” We also have data that patients who use our portal have a significantly higher level of patient satisfaction with their physician and care team than those that don’t. This is an association, of course, not a causal pathway, but it makes us believe that patients who use a portal may be more activated in general.
There’s a comment that the portal “cannot replace the provider-patient relationship.” I completely agree. At the same time, I think we should keep working with the profession and our Informatics peers to make sure that the portal is promoted as supportive of the best relationship, in a virtuous circle way. I think this can be done…as I’ve seen it done this way.
3 Comments
The underlying issue within this and other studies, from my perspective, is not the technology involved, but the facilitation of effective communication among patients and providers. As one of the patients in your posting commented, this technology and, indeed, all patient 'education' intiatives (including printed pieces) are simply TOOLS to facilitate communication among providers and patients. Thus, the conclusion drawn in this study is not surprising: the patients using the portal were those who experienced poor in-person communication with their clinicians and turned to another vehicle in order to establish communication. Those who were satisfied with their in-person communication with providers had less need to communicate via other vehicles.
Listening to patients is and always has been imperative. It is called 'phenomenology' in some professions — that is, the patients' words reveal very important information about their experience — and this is equally important as information obtained through clinical analysis/diagnosis. John Berger's "A Fortunate Man" expresses this concept, beautifully.
Amy,
Thank you for the recommendation for John Berger's book (I'm working to get it from my library now) – it's a great one for someone like me because the exploration of the tool quickly turns into an exploration of the way we carry ourselves as a profession. How did we get here and how can we do better? This is what was behind some of my questions above – what is communication like within the practices studied?
At the same time I appreciate the effort to publish the patients' true care experiences, especially in an industry where transparency is still at a premium. The PHR is often the trojan horse for the bigger conversation that you are talking about; I like that part.
Thanks for the great comment,
Ted
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