Survey on PHRs: Interesting Data, Wrong Emphasis

There’s a new study on PHR use out today (although it looks like Brian Ahier ignored the embargo in his good summary! Update–he didn’t, he just posted late PST so it looked like he did. Sorry Brian!) funded by CHCF and done by the (unknown to me) Lake Research Partners. You can follow the Twitter hashtag #phrpoll to see what Jane Sarasohn Kahn and various others think from the live press conference in DC. But I’ve read the data sheet which has the full poll responses, and here are my (admittedly very quick) take.

1) PHR use is apparently at 7% about double from the last time some one asked (Markle, a few years back). It’s still low and it’s an irrelevant number, instead what’s more interesting is where people say they get and they want to get their PHRs from, which leads to…

2) People say they want to get their PHRs predominantly from their doctors and hospitals. Next requested is their insurers. Independent companies (Google & Microsoft were stated in the questions) are only wanted by about 25%, same as employers (q23). Most who have PHRs which deliver data to them now get them from their insurer, although I suspect Kaiser is viewed as an insurer by many people which probably skews that answer.

3) Most people want online services. Roughly two-thirds of people want better online services from the health care system. Big majorities think getting their health information online at the doctor’s office (i.e. having their doctor use an EMR) is a good thing and most want that information shared with them. BUT it’s not the data they want, it’s services that are enabled by that data—lab results, appointment scheduling, reminders, information from the doctor about care regimens. All requested by more than 60% of those who don’t have a PHR now (q21). Which leads me to increasingly confirm my belief that PHRs don’t exist. Instead there’s data (coming from the emerging data utility layer) and applications that provide services,

I’d recommend digging into the survey answers yourselves rather than listening to the synopsis which is barking somewhat up the wrong tree. There’s lots of good data in it for people who care about online consumer use of IT. Full toplines are here. Let’s see if we can get the full data file from CHCF too.

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15 replies »

  1. Kudos to Matthew Holt — you got it just right! PHRs aren’t buckets of data — in their best incarnation, they are systems of applications running on data feeds from a variety of data stores, it is the APPLICATIONS that are really useful to lay people, not the data alone! In the spirit of disclosure, California HealthCare Foundation funded part of the first round of Project HealthDesign.

  2. The CHCF survey highlights several encouraging trends and provides an informative snapshot of consumer engagement with PHR technology in the U.S.
    There is broad acknowledgement that no single solution exists for the ailments of the healthcare industry, but we think that technology can help to engage consumers as active partners in their health and wellness. As manifested in the survey results, one of the biggest challenges we face to broad scale adoption of online health solutions like PHRs is in growing awareness across consumers and healthcare providers of the value that these solutions can provide to all parties.
    Any and all efforts in engaging consumers in their health management are to be applauded. However, as others have pointed out, there are limits to the value that PHRs can provide if tied to a specific provider, health plan or employer. The information becomes tethered to the organization and its value is lost in the event that the user changes jobs or relocates. With Microsoft HealthVault, we have moved beyond the scope of a traditional PHR, and developed an online platform that supports a wide variety of health and wellness applications and connected home healthcare devices. In this context, consumers can share their health information across family members, healthcare providers, and any number of other stakeholders within the healthcare system – while maintaining control of the information. We have enabled a free exchange of data so that it is accessible wherever and whenever it is needed and can be acted on for meaningful results.
    The importance of this kind of approach cannot be overstated when the ultimate goal is to allow every consumer to keep their health information handy and secure, so that it’s always available to them, their family, and their trusted network of caregivers when and where they need it.
    David Cerino, General Manager, Microsoft Health Solutions Group

  3. John and Margalit —
    More, even deeper research that compares users of different types of tools and services would be great. That being said, this is the first national survey on health IT that “oversamples” for people who are actually using such tools. Usage of all health IT tools and services, as you know, is still very low — for example only 2% of respondents reported using a health related app for a cell phone. (The one exception is health Internet searches — 67% have done them.)
    The following question was used to identify PHR users for purposes of the survey: “Some hospitals, doctors’ offices, health plans, and different companies are offering Web sites where you could get, keep, and update your health information online. This information could be lab test results, medicines, doctors’ visits, or other information. You would get a user name and pw so that only you could see your information on this Web site. Have you ever used one of these Web sites where you can get, keep, or update your health information?”
    Yes, the emphasis in the definition is more on access to data than on transactions, but as the survey shows, people are getting value out of that. PHR users also report a high level of interest in various more “transactional” features… but many haven’t yet used them. (See slide 14.) It’s unclear why they haven’t–perhaps they are using PHRs that just don’t enable these functions (yet)?
    Regarding Margalit’s question re the underserved, people with incomes under $50K report greater knowledge about their healthcare, asking their MDs more questions, a greater feeling of connectedness to their doctor, and a greater likelihood of taking steps to improve their health as a result of having a PHR — relative to people with higher incomes.

  4. That’s exactly it, John. That’s the word I was missing – transactional. If you think about it, it’s the same value proposition that EHRs have, or should have, for physicians; save time, save money. These PHR are not a social, fun app and it’s interesting that there was a lack of interest in having one on the iPhone for example. It’s like paying bills online, and of course, making sure your accounts are in order. Very utilitarian. Ten years from now calling the doctor will seem as archaic as licking stamps.

  5. Hi Margalit,
    We certainly agree on just about everything, at least regarding your most recent comment with regards to this survey, some of the results, the need for even deeper analysis and of course, exactly what is meant by PHR in the context of this survey.
    Only a couple of things I would add:
    1) Pretty universal response in this survey that users and non-users wsh to use a PHR first and foremost to insure that what is put into their records is accurate.
    2) People want to use these tools to drive transactional processes, whether that is making an appt, doing an Rx refill, having a quick conversation, via email with their doc, etc. There is very little interest in a digital filing cabinet.

  6. John,
    Read your take on this particular survey and looked at the survey data again. I still feel that I need all the gritty details before I can safely agree with the authors’ conclusions, but yes, there is an increase in use and yes, privacy concerns are alleviated by uneventful use over time.
    However, I think it is very important to specify exactly what was being used, and the term PHR, as currently understood in the industry, implies a different tool than the one the survey participants reported on using.
    For example, regarding security, portals that are connected directly to the physician and are provided by the physician should be more mindful of privacy than a public PHR provided by someone on the Internet. That could explain the increasing comfort of patients with security and privacy arrangements.
    Also, the benefits most sought after were mostly in the realm of communications with the doctor or the practice. It’s the conversation that matters and the data is there to make the exchange meaningful (plagiarizing freely from Matthew’s Health 2.0 report above :-). I guess you could call this exchange actionable, where the actions are mainly directed at the clinic and a counteraction is expected.
    We do need a lot more research, but it seems to me that the perfect health web tool would combine the functionality, data availability, comfort and security of a physician based portal with the social and connected nature of the Web at large, without compromising either privacy or security.
    It could probably go either way, but the simplest way from a technology point of view, would be to build these tools from the EHR and out towards the Web, as opposed to from the WEB and in towards the physician EHR.

  7. Hey Matthew, guess it really all depends on how you define the term PHR. If you use Markle’s definition, then you will see that a PHR is not simply a data repository, but also enables one to take actions based on the data/PHI therein. This does address the issue of making one’s health data actionable and thereby driving transactional processes. But Matt, don’t get me wrong, I am not a fan of the term PHR as I believe it connotes a static file cabinet like environment and not a dynamic, rich environment where the consumer truly has control of their PHI and can leverage it as they see fit.
    And while Margalit raises a couple of good points, believe these points are more of a looking at the trees and not the forest as it pertains to this particular survey/report. What is truly important in this survey is that indeed, use of PHRs is growing, that consumers are deriving value in its use and that the oft-tossed about issue of privacy, while important looks to drop by nearly 50% once a consumer begins using a PHR.
    Chilmark did its own quick assessment of the report (did find some of the findings a bit odd) which can be found at: http://chilmarkresearch.com/2010/04/13/survey-uncovers-strong-growth-in-phr-usage/

  8. Margalit raises some very interesting points. I think a broader discussion of the distinction between a PHR and a patient portal is needed. When determining the best method to provide a patient with an electronic copy of their medical record within 96 hours after a visit, the method of delivery will be important.
    I have said before that all PHRs are not created equal, and I often wonder if at some point a type of certification for PHRs will be needed. In any event, this study doesn’t seem to differentiate between a patient portal provided by a payer, by an EHR vendor, or one the patient actually controls like HealthVault or Google Health.
    I’m actually satisfied with the sample size, but do wish we had access to the raw data. Data longs to be free…

  9. I don’t think that I am inordinately stupid, but I have never heard of a “PHR”.
    Might I suggest that when you use acronyms, somewhere in the article (preferably in the beginning) you define what they are.

  10. In the UK, about .5% of over 1 million patients had looked at their care records. People do not give a s— about the gory details and want their doctors to take care of the details. The worry index escalates when people start reading about stuff they do not understand and will never understand.

  11. Legacy,
    Welcome! & how good of you to post on what must be your first visit to any health care resource that focuses on developments in the 21st century.
    You’re perfectly correct – Matthew should have consulted his style manual, and spelled out Personal Health Record on first usage in his post. A pox on his inconsiderate soul.
    Fortunately for him, and you, there’s this thing called the internet that is of immeasurable help to those with questions about things like acronyms, etc.
    Found on this internet thing is an information purveyor known as Google, which if you type your elusive acronym plus “definition” in its handy “search box”, and click enter, will provide you just the information you seek!
    “Oh brave new world”, etc

  12. I don’t think that I am inordinately stupid, but I have never heard of a “PHR”.
    Might I suggest that when you use acronyms, somewhere in the article (preferably in the beginning) you define what they are.

  13. Well, I just read the report and the questionnaire. I really don’t see how this relates specifically to the type of product usually referred to as PHR. Most of the respondents are using Patient Portals tethered to their doctor’s office/hospital and I agree that the large insurer number is probably due to Kaiser, but some payers provide portals too.
    The point of difference is that portals are about communication, not data aggregation and organization. It looks to me that this is exactly what the respondents indicated that they want and value: real time, bi-directional communication with their doctor.
    As to the value of PHRs to the underserved, I assume the conclusion is drawn from the question about people being prompted to take steps to improve their health, where 50% of those making less than 50K said yes. Besides the fact that the answer in the paper is marked as having a small sample, I would like to mention that 50k income is not really underserved unless the respondent is part of a family of four and has no insurance or is underinsured. A 27 year old single man in a small town in Idaho, making 50K is not underserved.
    I would also like to know what steps were taken to improve one’s health and what were the outcomes, before I would say that the tool provided benefits.
    All that said, it’s a very interesting study. I just wish there were more granularity of data available for each response, and I wish we had a much larger sample of users.

  14. Hi Matthew –
    This survey is incredibly rich and I’d encourage people to dig deeper in the actual data as you suggest—not because the emphasis chosen by the foundation is “wrong”—but because there are many interesting topics to be explored. The survey had double the number of questions in a typical survey, hence the wealth of info. (I worked on it with CHCF and Lake Research.)
    Regarding your comment re PHRs being the wrong emphasis (as opposed to services that use health data) I agree that consumers’ interest in more features and services is one story the findings tell, but not the main story and not incompatible with our emphasis on PHR benefits.
    To my mind, “PHR “ is an evolving concept—it includes access to data and (ideally) tools (eg “services”) to engage with that data. Today many PHRs are limited to mostly providing access to data–but that is changing. As you noted, the survey explicitly asked questions about people’s use of and interest in particular functions, applications and devices—and it’s pretty high.
    In any event, I stand by the view that the survey’s most important finding is about the benefits for underserved people & those with multiple chronic illnesses from greater online engagement with their health. I think the point probably applies regardless of whether it is specifically via a “PHR “ or some constellation of other tools. The fact that use of PHRs–limited though they may be at this time—results in benefits indicates to me that even greater benefits may result when consumers can more fully engage through additional services.

  15. Thanks Matthew 🙂
    I’m kinda new at this, having only just reached my one year anniversary for blogging, but I try to always play by the rules…
    The most significant implications I see in this new data are that with poorer and underserved people gaining such benefit from PHR, there should be some additional policy emphasis placed in this area.