GeriTech

In Search of Technology that Improves Geriatric Care

personal health records

In Search of a PHR for Aging Adults & Their Families

[This post was first published on The Health Care Blog on 1/11/14, titled “In Search of a Really Usable PHR.” There are several interesting comments posted there.]

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.
    • 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 ofMyKinergy, 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?

Wanted: A managed personal health record for assisted living

 [The following clinician guest post is by Dr. Alan Pitt, who is helping to plan a senior living community under development. We met recently at Health 2.0, and he was nice enough to write a post about the tech tool he is currently looking for: a managed personal health record. (This post is cross-posted to his blog too.) Thanks Alan!]

“I’m not as scared of dying as I am of growing old.” – Ben Harper, Glory and Consequence

Whether we admit it or not, most of us are afraid of growing old. There is a sense of loss, of youth and vigor, coupled with the burden of managing your health in relative isolation. Although Americans would like to think that we are each responsible for our own care, most of us as individuals would far prefer for someone to be there, helping us through our time of need. Years ago I was advising one of the Presidential hopefuls regarding a healthcare platform. I suggested that the position should be that individuals be responsible for their own health, but as a country we would partner to provide the tools for the individual to succeed. Now, almost a decade later, we are not much closer to this goal.

Personal Health Records (PHRs) were thought to be the answer. These records differ from more traditional EMR in that they are owned by the patient and aggregate information from multiple sources to give a complete picture of the patient. For example, they might include clinic visits from multiple providers, hospitalizations and updates on an exercise program. Literally billions were spent on PHRs by the likes of Microsoft (HealthVault) and Google. Both efforts were failures with thousands (in the single digits) rather than millions of enrollees. As noted by David Shaywitz, healthcare is a negative good, something viewed more with resentment than in any way positive. And that extends to things that keep us healthy. To interact with your health means you are imperfect, you are mortal.

Rather than a PHR, I would like to propose a different tool, a managed PHR (mPHR). This would be owned by the patient, but managed by a surrogate, such as a family caregiver or even a care coordinator (CC). This person would be responsible to keep the person on track, taking their medications, keeping their appointments, explaining their illness (or at least researching their problem). This may seem far fetched, but I believe CC will be a new job in 3-5 years. And when this army spreads across the land, they’ll look for a tool to do their work. And it won’t be an EMR. It will be a mPHR.

What would the perfect mPHR do? 

Here is a list I’ve compiled:

  • Collect and organize data from disparate hospitals and clinics 
  • Store and view previous radiology exams 
  • Facilitate med reconciliation and education
  • Send reminders
  • Manage exercise programs
  • Allow differing levels of permissions and access…for the patient, the advocate and family
  • Message those defined in the persons ecosystem if the PHR identifies a down trend.
  • Report on utilization and changes in utilization
  • Collect biometrics such as weight and blood pressure, and also track problems such as depression and pain indices with reporting and messaging
  • Link/suggest support groups based on the problem list 
  • Leverage secure texting and email for messaging
  • Be platform agnostic & cloud based

The critical thing here is actually not the functional requirements…these have already been fairly well defined…it is the ability to easily work with surrogates and family while maintaining some level of choice and control by the patient.

This is not an idle ask. I am now working with a developer building senior communities with integrated care and care coordination. I can buy an EMR, but not an effective PHR for these communities. With any luck at all, we will be managing thousands of lives in these communities in the next few years.

To all you bright entrepreneurs out there, help me out. Build the perfect mPHR. If I am right, and there is a lot of evidence I am, you’ll transform how we care for one another, and make a lot of money doing it. I won’t be your only customer.

Alan Pitt, MD, is a Professor of Neuroradiology at the Barrow Neurological Institute in Phoenix, AZ, and has been a speaker at Health 2.0. His skills and talents include cloud-based informatics, innovations in telehealth, and finding financially sustainable ways to improve healthcare. You can reach him at alanpitt [AT] me [DOT] com.

How to Help Families Assess Quality of Care

[This post was first published on The Health Care Blog on 6/27/13, titled How Patients Can Assess the Quality of Their Outpatient Care.]

Even before I launched my geriatric consultation practice, I found myself often poring over another doctor’s outpatient notes, trying to explain to a patient what the other doctor was doing.

Sometimes these other doctors were specialists to whom I’d referred the patient. But often they were simply clinicians – either previous PCPs or currently involved specialists — whose involvement with the patient predated my own.

Not every patient had questions and concerns about what their other healthcare providers were saying, and doing, but a fair number of them did. And family caregivers, in particular, were often concerned that perhaps their older loved one hadn’t been getting the “right” medical care.

These are, in truth, legitimate concerns patients have. In a busy outpatient setting, doctors often don’t have the time to explain the assessment and plan to a patient and family. And in many cases, the care that clinicians provide may not correspond to best practice guidelines – if applicable to the situation – or to the patient’s preferences and values.

So if you are a concerned patient or family member, and you’re not entirely sure about the medical care you’re getting, what to do?

Should you:
  1. Look up the provider’s quality ratings online, through a government, non-profit, or other website?
  2. Figure that the ACO or payer is on top of it, now that we are moving to pay-for-quality and fee-for-value?
  3. See what other patients have said about the provider’s care?
  4. See how many doctors are referring to the provider in question, and assume that if many doctors refer to this clinician, the clinician must be good?
  5. Look up your medical problems online, and try to determine for yourself whether you’d been getting the right medical care?
  6. Get a second opinion from another doctor?

My guess is that most patients and families end up trying one – or both – of the last options. In this post, I’ll explain why I’ve come to believe that facilitating second opinions is integral to empowering patients, and to improving the quality of outpatient care.

Why seek a second opinion

I don’t know about you, but when I’ve found myself trying to solve a problem in which I lacked adequate expertise, I’ve turned to a professional for help. (I haven’t had to do this for medical reasons in the past decade, but have done it for issues such as home renovation and website design.)

And in many cases, after meeting with an expert for a while, I’ve then turned to yet another expert to get an additional perspective on the issue at hand.

Why? Well, how else am I supposed to determine whether expert #1 is providing me with suitable expertise, especially if after seeing expert #1 I’m left with a nagging feeling that maybe this isn’t quite the help I wanted. In my case, the stakes have been my time, money, and satisfaction with the end product. But if it were a question of health and wellbeing, I’d probably be even more diligent about getting a second opinion.

Incidentally, this is how many patients and families now find me. They have been getting care, but they are either dissatisfied, or they’re worried that perhaps not all the right things are being done.

And so even though I’m happy to be a consultant to other doctors, I’m now mainly a consultant to elders and families. And just as I did when I was a PCP, I find myself spending a lot of time explaining to families what other doctors are doing.

This, I think, is good work to be doing. By looking over records and discussing a family’s medical concerns, here are the specific things I’ve found myself doing:

  • Reassuring families that the current medical treatment plan is reasonable. Often, in looking over the care, I find that the medical care so far corresponds to guidelines and common standards of practice. However, in many cases clinicians have not had time to explain their approach in depth to the patient and family. Families are often relieved to hear this, and appreciate developing a better understanding of their usual clinician’s plan.
  • Pointing out which aspects of the care plan are worrisome. Worrisome, as in really not concordant with guidelines or best practice. These include benzodiazepines for sleep in the elderly (with no discussion of the risks, or plan to avoid indefinite benzo use), or failure to initiate workup for an alarm symptoms such as significant weight loss. This also includes failure to follow-through on a plan; I’ve come across some charts in which the PCP repeats the same plan to get labs or pursue a study, at every follow-up visit. (In one case, the patient’s family had no idea that this was the plan.)
  • Pointing out medications, procedures, or other medical interventions that are likely to be of marginal benefit. This comes up quite a lot in frail elderly patients, because many common approaches in general medicine require time to benefit (i.e. statins, tight glucose control). In other cases, clinicians have developed the habit of referring patients for tests that research has shown to not be so helpful, such as screening for asymptomatic carotid stenosis.
  • Pointing out which aspects of the care plan could be considered choice and preference sensitive. There are some things in medicine that definitely should be done. For example, if an older person has a loud murmur and shortness of breath on exertion, he or she should almost certainly be sent for an echo, to evaluate for symptomatic valve disease. But for many other things, especially when it comes to elderly patients – or patients of any age, in truth – there are many possible ways to proceed, all of which could be considered reasonable. Back pain without alarm symptoms? One could refer for physical therapy, or prescribe analgesics. Or do both. Ideally this would depend on the patient’s preferences and particular circumstances. But in common practice it seems to depend more on the style of the clinician.

 

Why we should make it easier for patients to get second opinions

The main reason to do it relates to last point above: we should enable patients to get a second opinion because often there is no definite right way to proceed medically, and so how to proceed is essentially a judgement call.

And without access to second opinions, it will be very difficult for patients and families to determine which aspects of their medical care involve judgments calls.

Now, in an ideal world, this wouldn’t be an issue because clinicians would be able to consistently let patients know which aspects of the treatment plan consist of judgment calls, and would always offer patients the option of shared decision-making for these situations.

But the real world is different. Most clinicians are not used to presenting patients with options, and then tailoring the care plan to meet the patients’ preferences rather than a clinician’s habits. If nothing else, doing so takes time, and no clinician has much time these days. So judgment calls proceed according to the clinician’s judgment and preferences, in accordance with our time-honored habits of letting doctors decide because presumably they know what’s best for the patient.

Except, they often really don’t know what’s best, or even better. Among other issues, in many cases clinicians have not had the time or inclination to develop a good understanding of the patient’s experience. To quote from Dr. Larry Weed’s “Medicine in Denial”

“It is the patient, not the physician, who must live with the risks, the pain, the trade-offs, the effort and time that decisions may entail.”

On their own, patients experience pain and effort. But they may not be aware of trade-offs, risks, and alternative options. For that, they need more information, and although some of it can be found through diligent searching online, they should also be able to access an expert who can synthesize information and tailor it to the situation at hand.

In this way, patients and families can be empowered to check on the quality of their care, and can identify other courses of medical treatment may be a better fit for them.

Barriers to second opinions and how to overcome them

There are, of course, some barriers to making high-quality second opinions more easily available to patients. They include:

  • Difficulty accessing patient data and bringing it to another clinician. My own work is often held up by the effort of obtaining records and information from other clinicians. Patients should be able to access and collect their own healthcare data, as this will facilitate care coordination and empower patients to participate more in their own healthcare. (Give ‘em their damn data!) But until this is widespread, the challenges of health information exchange make it hard to have another clinician weigh in on one’s care.
  • Inadequate clinical documentation. Even when one manages to get information from another clinician, it’s usually quite hard to tell what the clinician was really thinking or planning to do. Before templated EHR notes, the problem was that notes were very short and uninformative. (See Larry Weed’s 1971 grand rounds for a hilarious and biting critique of clinical documentation. Sad to say that things have not yet improved much.) Now that EHRs provide templates, I receive notes with lots of text and still have no idea what is going on. Plus some of the information is quite frankly wrong, presumably because the clinician has checked too many boxes in a hurry.
  • Difficulty accessing and identifying a suitable expert. Even when patients have gathered the right medical information, they may often find it difficult to access someone for a second opinion. Academic clinics often have long waits for an appointment. Clinicians who are not subsidized by a larger institution may not offer appointments that are long enough to allow for review of a complicated medical situation.

Summing it up

Second opinions can help patients and families check on the quality of their care, in real-time. This can reduce a family’s anxiety about ongoing medical care, and can help patients better understand the care they’ve been receiving.

Although occasionally real gaps in care are uncovered, in my own experience I’ve found that second opinions mainly help patients and families identify other management approaches which their previous clinician may not have discussed with them. For older patients in particular, care should be individualized and tailored to the patient’s – and caregivers’ — needs and preferences. Historically clinicians have tended to dictate care according to their own habits and preferences, in part because shared decision-making takes more time. Second opinions can help educate patients, and empower them to better individualize their care.

Barriers to faciliating second opinions include difficulty accessing clinical information in the possession of other providers, as well as inadequate information within the progress notes. Last but not least, patients may currently find it difficult to find a provider willing and qualified to provide a second opinion.

Designing for Caregivers of Elders

[This post was first published on The Health Care Blog on 5/25/13. See the comments for a short response from Microsoft Healthvault’s Sean Nolan. (Thanks Sean!)]

What user personas do healthcare technology designers and entrepreneurs have in mind as they create their products? And how often is it the family caregiver of an elderly person?
This is the question I found myself mulling over as I wandered around the Health Refactored conference recently, surrounded by developers, designers, and entrepreneurs.
The issue particularly popped into my head when I decided to try Microsoft Healthvault after listening to Microsoft’s Sean Nolan give a very good keynote on the perils of pilots and the praises of platforms (such as HealthVault).
As some know, I’ve been in search of apps and services that can help older adults and their families keep track of lengthy and frequently-changing medication lists. For years now I’ve been urging family caregivers to maintain some kind of online list of medications, but so far I haven’t found a specific app or service to recommend.
Why? Because they all require way too much effort to enter long medication lists. Which means they are hardly usable for my patients’ families.
Could HealthVault do better? Having heard generally promising things about the service these past several months, I signed up and decided to pretend I was the daughter of one of my elderly patients, who had finally decided to take Dr. Kernisan’s advice and find some online way to keep track of Mom’s 15 medications.
Sigh. It’s nice and easy to sign up for HealthVault. However, it’s not so easy to add 15 medications into the system. When I click the “+” sign next to current medications, I am offered a pop-up box with several fields to complete.
I can’t help but think that when HealthVault’s UX team worked on this, they must not have considered the case of the 58 year old woman trying to enter the lengthy med list for her 85 year old mother.
This is too bad, because if they had considered the caregiver of an older adult, they surely could’ve come up with some better options. For example, consider what happens when one signs up for a new social media platform these days. Usually, the service offers to connect to one’s email account or contact list to conveniently import useful information.
Similarly, if HealthVault had designed with lengthy medication lists in mind, they might have immediately offered the option to import medications from one of their major pharmacy partners, like CVS or Walgreens. (Oh wait. Looks like Walgreens and HealthVault broke up recently. Bummer.)
Unfortunately, as far as I can tell, most companies don’t seem to have considered usability with the needs of an older medically complex patient in mind, unless they are specifically focused on the aging/caregiving market. (And even then, I’m not always sure the design can stand up to the medical complexity of these patients.)

How to help healthcare tech companies design for the older medically complex patient

The number one health services problem facing the nation is how to provide compassionate effective healthcare to the growing Medicare population, at a cost we can sustain.
Healthcare technologies companies often gravitate towards wellness, prevention, and serving a relatively young, tech-savvy population. But if they really want to serve the needs of society, they need to help those patients who are the chronic high utilizers: the elderly.
How to design for these older patients, and the family caregivers who are often their proxies in healthcare?
Developers and designers would need to start by better understanding how usable their product feels when used on behalf of someone with multiple conditions and multiple medications.
(Of course, in an ideal world the product would be designed to be usable by the elderly themselves, but let’s start with the simpler scenario – and currently relatively common scenario – in which young and middle-aged adults use healthcare technology on behalf of an older loved one.)
Here are three things that designers of healthcare tech tools should do:
  • Create a “family caregiver for a medically complex older adult” user persona. In my experience, family caregivers are pretty stressed and overwhelmed by the substantial job of managing an older person’s healthcare. They need help, and that help needs to be easy to use. Hence, I’d be surprised to see them adopt any product that requires labor-intensive data entry.
  • Involve caregivers of medically complex elders in the user testing of your product. See what happens when caregivers try to use the product on behalf of an elderly person.
Of the three ideas above, the second will probably be the most difficult for companies to implement. That’s because a realistic sample data set for a medically complex patient is hard to generate from scratch.
One possible way to tackle this would be for some larger entity governmental or non-profit entity to create this, and then distribute to designers and developers so as to help them serve this critical user demographic.
Can anyone think of a way to encourage medically complex patients to volunteer their de-identified data?
Other ideas on how to encourage developers and designers to create products that work for the caregivers of the elderly?

In search of a good caregiver support app

A friend invited me to his Carezone account recently, and I have a few thoughts to share.

For those not familiar with this product: it’s a web and app-based platform meant to help family caregivers stay “organized and effective.” It does offer encryption and privacy features, as it’s intended for a person’s care circle to be able to share potentially sensitive information such as medication lists, journal entries, and caregiving to-dos. (See some NYT coverage here; not clear that the reporter spoke to any caregivers or clincians but maybe that’s because it’s in the digital business section.)

Is it meant to share information with clinicians? As far as I can tell, no. There is nothing about sharing with a doctor on the website, and within Carezone, it seems you can only invite people as “helpers.”

So how did I end up in Carezone? Well, in general I often try things out pretending I’m a family caregiver, because I like to see what families might be experiencing in terms of user interface and options. So I’d signed in to Carezone several weeks ago, when a colleague mentioned recommending it to clients.

But in this case, I was invited to another person’s Carezone account because my friend wanted a few suggestions regarding the care of his elderly mother. To view the Carezone information, I had to create a login (my email) and password.

Hence I entered Carezone as a friend — or “helper,” per Carezone — but it’s not hard to imagine patients and families inviting their actual doctors to something like Carezone. After all, some patients currently come to the doctor with notebooks and file folders, so if they are now going to use an app to keep track of things, they will surely try to share this with doctors.

Here’s what I found: sections titled Journal, Calendar, Medications, To-Dos, Contacts, Notes, Uploaded Files, and Profile.

Looking for medical information, I started with the medications, which I find is usually the best-available proxy for a medical problem list when looking at a caregiver’s notes. Medications are presented in a list, with columns for “What it’s for” (which I like) and “Rx number” (really?) and “Where you get it.”

Next I skimmed the journal entries, which is where my friend has been keeping notes on what the doctors tell him; they are blog-like, in that they are time-stamped and go backwards in time.

And that was pretty much all there was to see. Was it helpful to me? So-so. We had a phone call and discovered that one of his mother’s key medications was not on the list. Oops, someone in the family had forgotten to enter it.

A few days later, I get an email from Carezone, with an updated journal entry. It occurs to me that PCPs are certainly going to think twice about these products if they end up getting cc’ed on everything that a family says to each other. I sign back into the service, and find some options in the settings to *not* get emailed every time there is an update.

What I think of Carezone so far

Many caregivers need help keeping track of their caregiving responsibilities, and need help coordinating with a circle of concerned families and friends. So there is definitely a need for this kind of app.

What I liked:

  • User interface seems pleasant enough
  • Medication list includes a column for “What it’s for” 
  • System suggests full medication names as one starts to type them in
  • Browser interface, which makes easier to enter information compared to smartphone

What needs improvement:

  • Entering medications seems onerous: multiple fields to type into (name, dose, how many times a day, who prescribed it, where did you get it, etc.). 
  • Features seem very basic:
    • Task list: you can assign a task to another helper on the case, but otherwise no
      due dates, no categories, just whatever you’ve put in the text box. If you’ve used anything more robust in the past, this feels a little anemic.
    • Calendar: doesn’t automatically understand the time something starts based on the text entry (if you’re a Google calendar user, this is annoying). Also doesn’t offer option to send calendar item to an outside Calendar like iCal or Google.
  • Doesn’t pull in info from other systems, such as pharmacy systems.
  • Doesn’t seem to offer any option to print things out, or export. For instance, no way to print medication list, other than to print from the browser.

Bottom line: Requires labor to enter data, features pretty basic, doesn’t seem designed to interface with clinicians (nevermind two-way communication; this doesn’t emphasize printing things to show the doctor), doesn’t seem designed to support medical management. Seems ok if a family wants to collectively blog about how an elderly relative is doing.

Can caregiving apps work without being designed for medical management?

This is perhaps my bias because I’m a physician, but I can’t help but think that these caregiver organization apps will be doomed to fail unless they can more robustly incorporate medical information and the medical care plan.

I say this because a very substantial part of what caregivers of older adults must do is manage medical issues. This includes things like:

  • Help an older person take scheduled medications. Big bonus if caregiver can snap a picture of the med and record it as taken.
  • Monitor symptoms and events, such as pain, falls, incontinence, confusion, shortness of breath, etc
  • Offer and track as needed medications, such as short-acting inhalers for COPD, pain medication for arthritis, heartburn medication, etc. 
    • This is really important to me. I usually have a lot of difficulty figuring out how much of an as-needed medication has been taken.
  • Implement non-pharmacological aspects of a medical care plan, such as timed toileting for incontinence, or a home exercise plan
  • Keep track of appointments and all the involved providers
  • Be prepared to provide an accurate medication list and health summary to medical providers. These providers might be entirely new, such as in urgent care or the ED, or might be regular providers, such as one of many specialists. (It’s not fair and right that patients need to handle this information exchange, but families need to be ready to do it, until we develop our perfect system of health information exchange.)
  • Take notes during a medical visit, to help an older person keep track of what the clinicians said, did, and recommended. (Again, not fair that this falls on patients, but currently important.)

In the end, I would think that caregivers might be better served by organizational apps which are extensions of personal health records, rather than free-standing apps stemming from a private social networking model.

Of course for this to work, the personal health record itself has to be properly designed to support the care of medically complex older adults — you’d think the entrepreneurs are planning for healthcare’s power users (aka Medicare beneficiaries) but as far as I can tell they often don’t.

This means a personal health record supports medical complexity, care coordination among multiple providers at different sites, and supports the involvement of family caregivers and paid caregivers. Such a record should also be able to inhale information electronically from various sources, rather than expect families to diligently type everything in themselves.

Can anyone recommend such a personal health record to me? Or a caregiver support app that helps with any of the above?

Summing it up

Caregivers sorely need tech tools to help them keep track of caregiving tasks, and help share this work with a person’s care circle.

I personally feel that caregiving apps need to be better designed to help caregivers manage the medical issues. Most older adults who need help from family and friends have multiple chronic conditions, and can have a fair amount of home medical management to address.

To date, the caregiver support apps that I’ve come across require labor-intensive data entry on the part of caregivers, and don’t seem designed to support the many medical tasks that caregivers often find themselves responsible for.

It’s possible that in the end, the better caregiver apps will develop as extensions of good personal health records, rather than as private micro social networking apps.

Addendum 2/27/13: I’ve received a tweet from Carezone and they DO support printing, however has to be done by using the browser’s print. See here for more info. I tried it out for a med list and it did look pretty good; I do think they should add a print icon to the interface though.]