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.
- Can it easily create a list/timeline of healthcare encounters? Bonus if the timeline connects you to medical data created by each encounter, but then again, a good search function could render this unnecessary. (For more on timelines in PHRs, see this post on how Facebook’s features could be incorporated into a health record.)
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.)
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?