In Search of a Really Usable PHR

When it comes to the health care of a frail older person, families really need a good personal health record (PHR) system. So I am once again preparing to take a look at what’s available, in hopes of finding something that I can more confidently recommend to the families I work with. (To see what medical info I urge families to track, see this Geriatrics for Caregivers post.)

I have — yet again — met a family with reams of paper health records. On one hand, they’ve done very well: at our first visit they were able to show me labs, MRI results, and even some specialty consultations from last summer. They even had a hospital discharge summary, although unfortunately not the one from the most recent hospitalization.

And they’d taken steps to digitally organize, having scanned several key items, as well as created an online space providing shared access to their parent’s information.

So this is better than the situation I often encounter, which is that an elderly person has seen multiple outpatient doctors, has been hospitalized in a few different facilities, and no one has a copy of anything handy. (See why new elderly patients are a killer in primary care? If there is no data you fly blind, if there IS data it can take hours to review it.)

Still, there are clearly many ways a little well-designed technology could improve things for this family – and for the doctors trying to help them.

Here are the problems we have right now:

  • Hard to search the whole pile, whether on paper or via the family’s online repository of  PDFs. These were not OCRed and searchable until I manually converted them with my own PDF editor,  after which I had to upload them to the patient’s chart in my EMR. Now each file is text searchable (for me), but the pile still is not.
  • Cannot trend the labs. Figuring out what has happened to this patient’s key lab values over the past year has been very labor-intensive. This remains a problem once the lab data is uploaded to my EMR, because it’s still in PDFs which have to be looked at one at a time. Being the nerdy doc that I am, I’ve spent a fair bit of time creating a note that summarizes the key lab data over time. Ugh. Better than nothing but a far cry from being able to graph and trend the patient’s labs as needed.
  • Takes ongoing time and effort to get records from the hospitals and other involved doctors. Kudos to this family for being diligent and persistent in asking for copies of everything they can. But wow, it’s a lot of effort for them, and I can tell you that in my practice so far, I’ve generally had to expend a fair amount of energy repeatedly asking for information from other providers. (And then I’ve had to try to organize all this info which comes in as scanned images via fax. Oy!)

We have other challenges too, like how to coordinate care with the assisted living facility and home health agency (don’t get me started), or how to keep track of the elderly person’s pulse and blood pressure (not so easy unless the elderly person is living with highly motivated family members, or has a paid home aide who is good at communicating and at taking directions).

But for this post, let’s stick with the issue of a good personal health record, robust enough for the volume and complexity of records associated with a declining elderly parent.

Personal Health Record features I’m looking for

Here are some of the features I’m looking for in a secure online personal health record (PHR) to recommend to families of elders.

Note: Right now I’m prioritizing a tool that enables families to keep and organize medical information, so as to help clinicians effectively help their elderly loved ones. (Wasn’t this the original purpose of the VA’s Blue Button?) I’m not looking for something that will keep track of a person’s steps walked for the past 5 years.

Key features wanted:

  • Easy to import information. The easier, the more likely families will do it. Which means, the more likely they will have useful information handy when the elderly person needs to see a new doctor.
    • Can you email/fax into the PHR? This might make it easy for medical offices to send the info, as fax remains a very common communication mode in health offices.
    • Can it accept info via BlueButton, or BlueButton+? I have yet to meet a family that has retrieved information via Blue Button but can see this becoming more common. Although, having just looked at a Continuity of Care Document created by a PCP’s EMR, I can tell you that it felt nearly useless to me. No lab results. No listing of recent hospitalizations, or even recent clinic visits. No date on the meds or even the EKG listed. Sheesh.
    • Does it allow the patient/family to send a request to providers, and does it log those requests? Does it have any kind of features that facilitate the requesting? Requesting info from providers is a pain. Features that make this easier (by generating the HIPAA release, for instance, and making it easy to send) are sorely needed.
      • My own EMR, MD-HQ, has a nice feature that allows me to signal when I’ve received the results for a certain lab I’ve ordered. This is a way of closing the loop, and I’ve often wished for similar loop-closing support when I request records from other providers.
    • Example of bad usability: Just looked at Healthvault, and to enter lab results, you have to enter each result by hand. Argh. Shouldn’t there be software that will look at a PDF lab report, recognize the important fields, and convert it into the PHR’s structured lab data fields??
  • Easy to find information within the PHR. Once you’ve gotten the info into a PHR, you need to be able to find what you are looking for (or what a doctor is asking for) fairly easily.
    • Does it have good search functions? Note that many EMRs — in my own experience — have horrible search functions, so I am really hoping that PHRs will not be modeled on EMRs.
    • Does it have a sensible approach to organizing medical information? I’ll admit that what is “sensible” is open to interpretation. It may be reasonable to adopt an approach similar to a well-designed EMR, so that at least the clinicians can easily navigate, but there may be other good approaches to adopt. I liked many ideas that Graham Walker had in his Blue Button redesign submission.
  • Easy to import data from a BP machine or glucometer. Obviously there is a lot of other health data that I occasionally want to follow (e.g. sleep, continence, falls, pain; even steps walked could come in handy). But to begin with, I’d look for something that can capture the internal medicine basics: BP, pulse, weight, and for people with diabetes, blood glucose readings.
    • Can it import BP data from a Bluetooth enabled cuff, or otherwise easily inhale BP data?
    • Can it easily import blood sugar readings?
  • Easy to import pharmacy data. Medication management and medication reconciliation is hugely important in geriatrics. Although it’s not a substitute for reconciling a med list with the bottles an older person has (and what actually comes out of the bottles), importing prescriptions from a pharmacy website is much better than asking family caregivers to manually enter them all.
    • Can it import prescriptions from pharmacies?
    • How about importing a discharge medication list from the hospital?
  • Easy to export and share health information. Once an older person has a repository of health information, she’ll need the ability to easily send/share data with health providers.
    • Can it fax information to a doctor? It should be easy to send multiple items at once, if needed, and it should log which info was sent to whom, and when. It should be possible to fax or send data
    • Can one give a health provider access to download/copy items? Although I think many doctors would prefer that info be pushed to them (less work than having to browse a patient’s online personal health record), I still think PHRs should allow patients and families to invite a clinician to access the info, especially if the lab data within the PHR can be trended.
    • Can one create and share useful summaries of vitals data? It is hard to review a long string of BP values. A well-designed summary, perhaps graphical, would be better.
    • Is it easy to create a printed summary of selected info? For in-the-moment clinical use of information, it’s hard to beat a good printed summary, and that’s what I’d suggest a family take to the ED. Of course, it’s also nice if in the ED a family is able to help the doctor access the PHR, in order to query for other needed info.
  • Easy to maintain a list of all healthcare encounters. I am always trying to figure which clinicians and facilities have seen a patient, in order to know what’s been going on, and who I might need to get information from.

There are of course other features that one might want in a PHR product. In a perfect world, the PHR would integrate with some kind of communication and care coordination system, so that all the different providers could stay in touch with the patient/family and with each other. It would also be terrific to have some kind of task/project management support built into such a system, to help everyone keep track of what needs doing next, and prevent problems from falling off the radar.

But in my own experience, it’s very hard for a product to do multiple things well. Heck, it’s hard to find a product that does just one moderately complicated thing well. So for now, I am prioritizing the functions of obtaining, organizing, maintaining, and sharing of personal health information.

In Search of Real Feedback on Existing PHRs

Now that I’ve told you what I’m hoping to find, who can give me some useful information and feedback regarding the now available personal health records.

I would really like to have something that I can recommend to families. To date, I’ve not worked with any families using a digital personal health record. Even the geriatric care managers I work with seem to not be using a modern PHR. (Surprising in a way, but when you consider the overall tech-conservatism of healthcare, not so surprising.)

So far, the main candidates I’m aware of are Healthvault and CareSync. I also know of MyKinergy, which combines a health data repository with a care coordination platform.

I have briefly tinkered with Healthvault, and it seems labor-intensive to enter data, unless you are using one of the many apps/devices that it’s compatible with.

Does anyone have personal experience to share on using a personal health record for an older adult? Has anyone put any of the products above through its paces?

Any suggestions on what I can recommend to the families I work with?

Leslie Kernisan, MD MPH, is a practicing geriatrician, cautious techno-optimist, and enthusiastic caregiver educator. She hopes to someday be surrounded by cool tools and innovations that will make great geriatric care totally doable for all, especially primary care providers and family caregivers. She is a regular THCB contributor, and blogs at Geritech.org and at drkernisan.net.

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37 replies »

  1. Hey Leslie, Glad to see this article, the way you describe how necessary is to have a PHR system. But according to a study, It has shown that (PHRs) are less frequently used by racial or ethnic minorities and patients with low annual income. So in your opinion, what would be the actual reasons behind this? This source will give you deep information to know more.

  2. nice selection of professional healthcare blogs. but still i think there is one site i found a year later doing legendary work in healthcare IT field. they’re doing innovative work in the field of PHR (completely free – which i personally use to store my health records) along with amazing information on various health topics : http://mediklik.com/

  3. Leslie,
    Thanks for taking time to post your comments and experiences about PHRs in such a detailed manner. You are correct, consumers/patients and caregivers are in need of better tools to help them manage their health. A PHR should be part of a tool which helps the patients/families solve real healthcare processes and challenges.
    At Healthspek, http://www.healthspek.com we have rolled out a personal and family health management tool with a built-in dashboard and underlining PHR. It is cloud based and Free to patients on the iPad. (other platforms coming).

    I like your list of features. It helps developers stay focused on benefits to the end users (patients/families/providers), not just techy stuff.
    The PHR must provide some automation for the import of medical information. At this point, the industry provides CCDs as a common and obtainable data format. Yes, there are many others, but according to MU standards all certified EMRs must be able to “transmit” a CCD to patients when asked. Also, BlueButton Plus will be a valuable tool for many. Healthspek has already received BB xml records and parsed into PHR sections.

    One of the end goals of a truly complete PHR is to have a “holistic longitudinal” record; all data from all providers and sources along with the patient generated data. PHRs connected to EMR portals are “silo’d ; that EMR’s PHR only has data from a specific provider’s EMR.
    Healthspek is untethered, and EMR agnostic. It can accept and handle patient data from any EMR sending out CCDs. Very much like MINT in the financial world.
    As a matter of fact, Healthspek encourages patients to go to their EMRs patient portal and download their own CCD for upload into their PHR. This helps EMRs with the MU Patient Access standard (More than 5% of all unique patients seen by the EP during the EHR reporting period view, download, or transmit to a third party their health information).
    The other feature of a comprehensive PHR is to provide a tool for “solving real healthcare issues. Healthspek does this with a Dashboard of functioning speks; to solve issues of – “my med list is long” (Rx listing), “can’t drive and my meds are low” (refill from app), “forgetting appointment” ( reminders), “which cost is best” (transparency), “I am sick with my kids at home”(telehealth), “at work with question for dr” (secure communications with providers), “ must take and record my sugars” (biometric monitoring),etc.
    A successful PHR will empower the patients to help simplify the vastness of the every changing healthcare system.

  4. Great post Leslie. We sure will follow your further contribution to PHR projects.
    Seem like many of us IT specialists are trying to develop product that fits practitioner and patient needs.
    All the technology to accomplish your requirements is in place, desired functionality is well known, great products are already on the market but patient awareness is missing.
    The most important question is, how to attract people to recognize the real value of PHR. Is it great User eXperience, integrated social networking or maybe gamification? It is obvious that PHR improves process of treatment in the long term, but users need to recognize usefulness on a daily basis to ensure quality in their health record.
    We hope your valuable experience will continue to help the community to provide the market many products that will delight both doctors and patients.

    • Glad you liked the post, but I’ll admit it’s not at all clear to me why users of a PHR need to engage with it on a daily basis.

      Managing health & prevention is one thing, managing chronic illness is another, managing acute illness is yet another, and managing your health information is still another. There are areas of overlap but I think each of these would have a different optimal approach.

      Lately in thinking of the PHR I’ve been thinking of the online service that consolidates my family’s financial data. We set up each source and then we have no need to interact with it daily; we go to it when we have a problem or if we need to summarize something for a third party (such as at tax-time). Why shouldn’t PHRs be like this, diligently working behind the scenes to keep your info so you can find it — and share it with clinicians — when you need it.

  5. Leslie, you highlight why so many PHR projects have failed so far. They have never really asked a doctor with patients who would benefit from a PHR what it is they want to see in the system. Rather they have designed it based on “good IT principles” rather than “good clinical principles”. The net effect is a system that meets all the technical requirements but provides no value for the doctor and patient in improving their communication, and thus remains unused.
    Hopefully more developers will use your post as a requirements document to go out and develop a good PHR for geriatric care.

    • hi George,

      Well, you and I are geriatricians in need of tools, but in truth such a PHR would be useful for any patient and family who had a lot of health information to keep and track…pretty much any patient who is medically complex, sees multiple docs, and experiences hospitalizations generates a lot of health information.

      So I hope the developers will think of this as a PHR for people with lots of medical problems…also known as “high-utilizers” and “most likely to suffer stress and poor outcomes due to clinicians — and families — not having easy access to the right information.” (I’ll have to find a shorter way to say this!)

  6. At Tyze we are working hard to create a solution to the problem that you’ve just so clearly outlined. Clear digital record keeping that values privacy and that’s user friendly is a huge need right now, as is the ability for an individuals friends, family and neighbours to contribute to their care. http://www.tyze.com

  7. It’s really staggering to me that fax is still in use for something so vital. It’s not secure. In fact, who even uses a fax machine anymore (except doctor offices)? Many new people are entering healthcare through ACA. When they transfer their old records, do they all come in via fax?! At least use a service provider to receive as an email for the short term. This is 1980s technology. I think every individual needs their own Personal Health Record independent of provider, granting access to providers. The issue of labs going to PHRs I believe is a service to docs to get lab results first! before patient. Not a technology issue.

    • In my own experience, records come in as paper, as fax, or as PDFs put on a CD. I think perhaps once I had to go to some secure site to retrieve records.

      Of all the options, fax is usually easiest because I have a digital fax that goes right into my EMR and I can easily put the records in the patient’s chart.

      Every lab or imaging center wants me to send orders by fax. Unsurprisingly, my EMR is set up to make it easy for me to fax orders out.

      I agree that fax is in many ways outmoded and lame, but right now the alternatives are often more cumbersome…like having the patient hand you their thumbdrive loaded with PDFs during the visit.

    • HIPAA laws are the primary reason providers are still using faxes. The laws require that providers encrypt digital communications (when emailed, stored at rest on a drive, or uploaded/downloaded). Such encryption is not built into most services or mail tools (like Outlook or Gmail). HIPAA does not have the same encryption requirements for faxes. Interesting how data security is preventing interoperability.

  8. Great article, Leslie. I recognize that you’re looking for solutions now, but I think long-term there’s a real opportunity in unifying the PHR/EHR concepts so that docs and patients have the very same info, not their own respective copies of each others’ info.

    Shifting tracks slightly, is anyone here familiar with SMART Platforms? http://smartplatforms.org/smart-app-gallery/ Basically a programming interface whose goal is to allow app developers to create apps that can mine any EHR’s data and present it quickly in visually meaningful ways, akin to the graphical summary of vitals you mentioned. I think the idea is that the apps could be used with either EHRs or PHRs. Curious if anyone is familiar with any of their apps.

    • hi Melissa!
      Well, I’m not quite sure what you mean by unifying PHR/EHR, unless you mean there is one health record that travels with the patient, and that all providers just put their piece into it with the patient’s record. We certainly might end up there eventually.

      Regarding mining any EHR’s data, sounds like a great concept and I look forward to it being technically feasible as soon as possible.

    • Melissa, Are you familiar with The Health Record Banking Alliance? They have been promoting a similar paradigm for some years and continue to promote the concept of aggregating medical and health data in one place so a unified record can be more complete.
      http://healthbanking.org/ They recently have recommended that quality reporting could be done more efficiently (perhaps more accurately) if data is taken from aggregated records.

      The HRBA business model white paper explains why current paradigms regarding health information exchange are not economically sound. http://www.healthbanking.org/docs/HRBA%20Business%20Model%20White%20Paper%20Dec%202012.pdf

      New technologies are making the ability to utilize data (patient-contributed and provider-contributed) in many different ways, using many different views, and our approach to communicating will eventually change. It’s evolving, and bringing good tools for helping both patients and their clinicians will be created and will change how healthcare is delivered. Today I saw a provider prescribed, patient decision tool for deciding what kind of surgery best fits a patient’s preferences and made me realize patient-clinician F2F time can be much different. What if many issues are explored through questionnaires in advance of visits, and clinicians have the time to narrow down the options before the visit. It seems to me there is more time with a physician talking about the details about the options, and not have to spend time asking a lot of questions. And the questionnaire may be much better at eliciting the right kind of response, and the patient doesn’t feel pressure to answer quickly or to please caregivers in some way. Doesn’t it help to explore options when shopping on line? Even if you go to a car dealer eventually, you are better informed if you’ve explored options online first.

  9. My 88 yr old father recently moved in with me……has congestive heart failure. As a part of home health, he is on daily telemetry of vital signs called a community Health Exchange. Lab results, x-rays, daily vitals provider visit summaries can all be accessed by authorized providers. While not exactly what you are talking about….a really good start to organizing data post discharge. Am impressed with the sophistication of the technology and ease of use. Dad logs in and uses himself every day……the more people that use……the better it will get, like all technology.

    • Wow, this sounds great. Congrats on finding a tech-enhanced home health agency.

      I hope they will let you keep the data, or some form of access to it, once the home health services end. I also hope your father’s primary care doctor is looped into this data stream.

  10. Leslie, it’s clear you’ve thought deeply about the problem, and I can promise you it’s something we do every day too. Most of what you’ve asked for is already part of HealthVault, although we know well that usability can always be improved in many areas.

    I don’t think you’ll see us auto-recognizing labs from an unstructured PDF anytime soon, but we can take them from blue button files, meaningful use care summaries (CCD or CCR), directly from Labcorp and Quest — and for manual entry, we just updated our Windows 8 application with a new, more efficient interface we hope to bring to the web soon.

    Bottom line is that these are tough problems, and they take commitment to solve. We’d love more constructive ideas for how to do better, and would invite you to join our user panel if you’d like to help.


    PS. Nice graphics :/

    • graphics are courtesy of THCB 🙂

      Nice to know that Healthvault has these capabilities. I just took another look and it’s really not obvious that it can slurp up labs from Labcorp and Quest. Shouldn’t it propose such a helpful slurpage when I go to my Health Information page and click “add lab test results”?

      Not sure we need to bring back the Microsoft paper clip from yesteryear, but seems it might be possible to give a user a little more help on how to get the info in. My general take is that if I — the slightly-tech-savvy doctor — have trouble seeing how to do something, then it’s going to stump most of my family caregivers.

      Anyway, I do try to appreciate that the Healthvault team is working hard to keep improving the product. Thanks for this work and for your comment.

      • A good post. I hope requirements analysts see this.

        The structured OCR is feasible only if the original documents are well designed in the first place. Most such documents exist in digital form somewhere – it’s better to get it in that source, which is less likely to introduce errors.

        Regarding Healthvault, it has a forum that is fairly active, and a decent API. I know that it has Labcorp and Quest interfaces because I have seen my lab results in it, albeit at different times with different insurers.

        But . . . The gateways from Labcorp and Quest seem to be provided only as part of an insurer’s PHR offering. Once you change insurers, you lose access to the vault, and all the data in it.

        So I resolved to request that each of these big providers insert the lab requests I have into Healthvault. To make a long story short, although this is a requirement — to provide electronic results in a digital format to patients — both have declined to do so.

        Upshot for your already long list: Ensure that the PHR — with all its interoperable gateways for labs and Rx — moves with you, not only within your current insurer’s world.

        • Mark, it’s unclear whether you were referring to HealthVault when you said, ” Once you change insurers, you lose access to the vault”, but we can assure you that is not the case for HealthVault. You own your HealthVault account. Your access to your data once it’s in HealthVault is not dependent on a relationship with a third party such as an insurer or hospital. One of the benefits of keeping medical records in HealthVault is precisely that it is “untethered” … your data remains with you.

          Leslie, thank you for your thoughtful article and opening this interesting dialog. Hearing how people want to interact with their health information in real-world scenarios helps us keep improving HealthVault.

          • Thanks for the response from a HealthVault rep. You’ may have seen my comments about this in the HealthVault forum.

            Indeed, a portable environment is what I thought would be provided, and maybe my situation is unique somehow. It’s not that one loses access to Healthvault; it’s that the data isn’t ported as expected.

            Some specifics may clarify this: the insurer patient portals (Empire NY, UnitedHealthCare NY) seemed to be white label – i.e., I could only get to the vault through their insureds portal first – which suggested to me that they used their own credential system and identifiers. These two portals were in use between 2005-2010. When I tried to get to this data in 2013 through my Live/Hotmail credentials – nada.

            Is it possible that the insurers used a version of Healthvault that was not intended to be untethered? Or perhaps they were tailored to the Labcorp or Quest gateways?

            The other possible wrinkle is that it appears that one’s provider (at least for Quest and Labcorp) must also use HealthVault? I’m not sure why this would be required either, as this restricts portability as well. (I wish I could force my physician onto HealthVault . . .) That’s another aspect that limits portability.

          • Hi again Mark. HealthVault doesn’t have white label arrangements like that, so it sounds like those original portals were not related to HealthVault. Just to be clear, leaving an institution would not remove the information from your HealthVault record.

            To your last point, we have many ways for providers to send data to patients’ HealthVault records, as described briefly at https://www.healthvault.com/providers. Some providers might choose to use HealthVault as their primary means of sending data to patients electronically. But a key point is that HealthVault is for patients/individuals.

            Thanks for the chance to clarify.

  11. Thank you for this comprehensive list of requirements. We will take a look at how to implement these into our platform, Medyear. We can keep you apprised of progress, if that is of interest.

    As an aside, Medyear is the world’s first personal health exchange (for the Blue Button universe) and will be available commercially in the next month or so.

  12. So here’s a related post for you and the other THCB bloggers to tackle. How do you get people to EVEN USE health records in the first place? Pay them? Give them tax credits? (Would that the ACA had done something about this.) Incentivize their primary care providers and insurers to educate them/upload them? Why can’t people handle this? Hint: we know the answer. It’s that the process is too frustrating and complex for most people to manage ..

    • Lots of chicken-and-egg problems. Health information portals and PHRs feel cumbersome and not very useful to people, so they don’t use it. Because they aren’t using it, we doctors are not used to helping patients use these, or even leveraging these platforms for better care. (Also, the work habits of clinicians are hard to change for a variety of reasons.)

      I think if every time a patient went to see a new doctor, the doctor said “give me access to your PHR so I can get info and send you info), patients would be more interested in managing and maintaining a health record. But doctors are unlikely to do this until lots of patients are using PHRs, and round and round we go.

      The right kind of incentives might help, haven’t thought about that twist much yet.

  13. Good post…. It may be easier to search for the holy grail. The technology is there but the will to make a comprehensive upload friendly PHR seems to be lacking. Healthvault started with lots of promise but seems to have stalled somewhat. What seems to be missing is some kind of universal translator that makes it easy to import electronic data, OCR data with limited augmented manual entry. A central translator that can be efficiently expanded to take various data sources (CCD’s, CCR’s, HL7 lab results etc)

    Whoever figures this out first will have a great head start on the others in this space…

  14. In your first paragraph, there is actually no working link to a Geriatrics for Caregivers post. And I can’t find such a post on your blog. Please help. Thanks.


  15. make sure to specify “allow 1 family member to send information to providers”.

    Otherwise docs will be getting conflicting and repeated requests from siblings/relatives that aren’t on the same page and our heads will explode.

    It is best to have one person requesting and disseminating information. Safer, less frustrating for all involved.

    • Interesting point.

      Well, the ideal PHR would keep track of what had been sent to whom,and would warn you if you were resending info to the same provider.

      Re repeated requests for health info from several adult adult children, in principle the patient should give permission for who can request info, or it should be the DPOA.

      If the process of requesting info from a provider’s EMR were more automated, our own heads wouldn’t have to be involved…would it matter to us if a patient’s PHR pings our EMR repeatedly for info?

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