Crowdsource request: What should we present during the PHR panel discussion at the AHRQ Annual Conference, September 14, 2009?

Note, this request is also cross-posted on the Chilmark Research Blog.

I have the distinct honor of being moderated by John Moore of Chilmark Research, as part of participation on a panel discussion entitled, “Personal Health Records: What Are They Good For?” which will take place at the Agency for Healthcare Research and Quality’s Annual 2009 Conference, September 14, 2009, 1:00 pm – 2:00 pm.

Prior to the era of social media, the moderator and participants for a panel like this would get together on a phone call and figure out what they were going to speak about, and then provide the information during the discussion that they wanted to.

Actually, even in the era of social media they still do that.

To think a little differently, I asked John if he wouldn’t mind suggesting some questions on his mind as an expert in the field, and then if we could crowdsource these with a broader audience (John said yes to this request!).

That’s what this blog post is for.

So first, brief description of what the session is intended to cover:

In recent years, health care providers, insurers, purchasers, and technology companies have launched personal health record (PHR) initiatives. This interactive panel discussion will provide insight on the PHR marketplace, adoption levels, and the goals and impacts of their use.

Next, these are the very thoughtful questions that John came up with. In the comments below, feel free to

  • Let me/us know which ones are of greatest interest to you,
  • Suggest others that we haven’t thought of,
  • Provide any answers you have from your own work in the field (we want to share leadership in all parts of our care system)
  • Provide any general comments

Thank you for your help with this – The goal is to share information that’s as close to what the audience is looking for (audience-centered care). After all, we are doing what we do so that every patient in every care system benefits.

(questions from John Moore below)

Following are questions that have been swirling abut in my head re: adoption

What is the breakdown of populations/demographics that actually use the KP PHR?

Is it just the worried well, or Mothers?

Are their any conclusions that can be drawn?

To what extent due specific sub-groups use, or not use the PHR, e.g. are there any racial or socio/economic disparities?

What is KP doing today to minimize disparities and insure broader participation?

What about Chronic Disease grps?

Has KP found that certain chronic disease lend themselves to greater PHR use?

If yes, what are they?

Reflect on the role of the physician in encouraging adoption and use of a PHR?

Does consumer use require a a lot of guidance and encouragement?

What tricks as KP learned along the way to encourage broader adoption and use?

How has KP embedded the use of PHRs into physician workflow and driven adoption and use by the physician (that is assuming that KP allows the pt to add comments/notes to their PHR)?

The transition from acute to outpatient care is fraught with challenges and data drops. How has KP used the PHR to minimize such?

And on a related note, how does the KP PHR accept clinical data from systems outside of the KP network (not sure it even does that today).

Since the title of this session is PHRs, What Are They Good For, will need you and James to circle back to some of the broader attributes of PHRs to practice, behavioral change & improved outcomes. No need to mention such things as 25% fewer offices visits as this will kill of most practices.)

Trust that is enough to get you started and I may think of a few more …..


I believe this is a good starting list. I would expand on the "reflection of physicians" question to ask this: how do we make phrs easy to fill out yet also filled with information that doctors will want to potentially integrate into their EHRs. Usually this data, while shareable, is still somewhat "siloed" because it is patient-created. AND many patients cannot gain full access to EMRs from various clinics or EHRS, so their PHRs remain somewhat incomplete.

As for who is using it, I think that what I've seen is family managers (women) and individuals who have chronic conditions because PHRs often have applications that can improve condition management and reduce the amount of times patients need to be in the doctor's office (for blood pressure management, for example). The apps that tend to have the most application are for tracking blood pressure and blood sugar as well as peak/flow meters for asthmatic patients.

Ted, the patient/consumer view seems adrift with the wide conference agenda – it's a bit of everything. Even so, keeping the discussion fully patient oriented would be key.

Some questions are being answered. There's growing data on users, and it's more similar than different across health systems: a bit younger (not much, even at VA), more educated, have more visits and more chronic conditions; less of the worried well. The disparities are there (Internet access), and potential for widening them also there (clinicians “choosing” patients for e-messaging).

Yet big questions about REACH and USAGE remain. More questions about consumer attitude, behavior, PHR functions and value:

What PHR-related messages – by clinicians and given directly to patients – resonate with people?

What is most attractive about first use?

What factors are related to continued usage? (individual factors, functionality, etc)

How is this different for integrated PHRs as well as non-integrated?

How do we measure usage?

Is usage related to outcomes?

Can we create synergy between patient-perceived value and clinician-perceived value?

What is the sweet spot to gain both patient and clinician value?

1. How do we get healthy people to use PHRs?

2. How do we get teens to use PHRs?

3. What incentives have improved use and adoption of PHRs?

4. How many physicians use PHRs to manage their health?

Comment: Being in the field, this is what I'm hearing. Patients don't want to enter data and manage their PHR unless it is really critical. Though a PHR is patient centric, patients want their physicians to manage their PHR. All that patients need is a dashboard to view their health information and also get alerts and reminders.

Anand, Lori, Sue, Drew, (and John),

Thanks a ton for putting some thoughts down regarding what would be of use to this audience. In reading John's description and speaking with others, I understand that the audience will be largely made up of AHRQ grantees, many of whom may be wondering how to get a Meaningful EHR user off the ground (and in flight).

I think it's important to address this potential need of the audience, to which I can fold in some of the specific data bits (special populations, outcomes, etc) requested above.

To respect the crowdsource contribution further, I will spend a little time talking about what we know about patient-entered data, patient-control, etc., functions that have been envisioned for an ideal personal health record.

With that in mind, this is what I wrote for the abstract of my portion of the discussion (keep in mind that John also asked us to keep this active and lively, hence the introduction):

"In the era of meaningful use and health reform, providing online experiences similar to those of patients who use every day, may be mandated for a much wider proportion of health care providers. Jack Cohcran, MD, CEO of The Permanente Federation, LLC recently said, "They say 'only Kaiser Permanente can do that (patient centered care)' as if it's sinister." What our experience and multiple national surveys show, however, is that the overwhelming majority of Americans desire more involvement and more patient-centeredness enabled by tools including personal health records. At the same time, Kaiser Permanente's success and accumulated knowledge can (and should) be leveraged to enable innovation throughout health care.

The Kaiser Permanente personal health record, My Health Manager, at, has 3.1 million registered members, with 163,000 visits per day, and 91.2 % of members reporting being satisfied or very satisfied, as of June, 2009. The experience of Kaiser Permanente members has shown that personal health records, implemented with patients in mind, can achieve high levels of adoption and use among patients and health care professionals. I will address the factors that contribute to the success of for patients as well as care providers, as well as specific findings about use and outcomes related to its use.

Crowdsourced discussions in advance of this session pointed to an interest in managing patient entered information and patient ownership and use of the information in the personal health record. I'll share information about future directions of the personal health record, including the new platform (entitled "Web Presence Platform") being built to support today's and tomorrow's digital health services provided by Kaiser Permanente."

I wouldn't be telling the truth if I said it will be easy to acquire all of this data and put it together for a 15 minute presentation. However, the magic of Web2.0 allows me to have your comments and others available to me as I do. Feel free to add more and much appreciated,


Ted Eytan, MD