GeriTech

In Search of Technology that Improves Geriatric Care

caregiving

Data on the Eldercare Workforce (including Family Caregivers) in California, & what it means

If you’re interested in how we care for aging people in California (or in the U.S., for that matter), you should definitely take a look at the latest set of briefs from the Eldercare Workforce Alliance.

I especially like that these reports have a whole section devoted to family caregivers, including an estimate of how many per state, and how many hours of unpaid care they are providing.

Must-see Data on Family Caregiving in California

Below are my favorite statistics from the California issue brief, which can be viewed here. (Emphasis is added by me.)

“Family caregivers in California— all 4,020,000 of them—provided more than 3,850 million hours of unpaid care in 2009. The estimated economic value of California family caregivers’ unpaid contributions in 2009 was approximately $47 billion.”

“Nationally, 46% of family caregivers performed medical/nursing tasks for care recipients with multiple chronic physical and cognitive conditions.”

Yes, you read that right. 4 million Californians are providing unpaid care worth $47 billion. And many family caregivers are performing medical/nursing tasks. (This is why I have a Geriatrics for Caregivers blog over at drkernisan.net.)

Other highlights from this California eldercare workforce brief:

  • Population aged 65+ expected to be 8,288,241 by 2030.
    • Compare this to a population aged 65+ of 4,246,514 in 2010, so we are talking about a 95% increase (!)
  • “Direct-care workers” provide 70-80% of the paid hands on care to older adults or those with chronic disabilities. 
    • This kind of work is a quickly-growing occupation, however a shortage of direct-care workers is anticipated.
  • California projected to need an additional 2813 geriatricians between now and 2030.
    • We had 739 certified geriatricians in 2011. Our current shortfall is estimated at 1081. (However, this brief doesn’t explain how the right ratio of geriatricians to older adults is calculated.)
  • By 2030, the ratio of “potential family caregivers aged 45-64 for every person aged 80+” is likely to decline to 4.4 to 1
    • In 2010 this ratio was 7.7 to 1.

What this all means

The Eldercare Workforce Alliance’s press release states that “New issue briefs show need for investments in workforce specially trained to care for older adults and support for family caregivers.”
As far as I can tell, the press coverage so far has largely focused on the paid workforce, and less on how we might support family caregivers.
Building up the workforce — by supporting direct-care workers and by training healthcare professionals in geriatrics — is certainly very important. 
But I would also argue that these reports support the following ideas which I’ve mentioned before in my blogs:
  • We should be teaching geriatrics to family caregivers. They are providing a lot of medical and nursing care, so they need training in how to adapt healthcare to “what happens as people get older.”
    • Just as we teach patients about their health condition, and how to care for themselves, we can and should teach family caregivers about geriatrics.
    • The goal is not to turn them into geriatricians or clinicians. The goal is to give them the knowledge and tools so that they can effectively help an aging adult with all the “self-healthcare” that is usually required. Also, if they know where to focus their energies, this might relieve a little bit of stress and anxiety for them.
  • We really need tech tools to help us implement geriatric care. These reports highlight just how many people are involved in health and healthcare for an older adult. They also note that much of this care is delivered to people with multiple chronic conditions.
    • We have historically relied on family caregivers to provide a lot of care to aging adults. Since fewer family caregivers will be available for each older person, we really need tools that allow everyone involved to do more with a given amount of time or energy.
    • We also need tools that address family caregivers’ needs for support and relief.
  • Innovators should be careful about developing a tech tool that is not usable by people with “the things that come up as people age.” I started this blog in large part because so many tech tools I come across seem not designed for people who have:
    • multiple chronic conditions
    • chronic physical impairments
    • chronic cognitive impairments
    • a caregiver often involved.
But in the future, many of us will urgently need tools that work for people with these issues. Hence it’s important that as many tech tools be “geriatrics-compatible” as possible.
So. I hope you’ll agree that the data demands tech solutions to make geriatric care more doable.
Now, let’s go bring the best of what we know in geriatrics to the tech & innovation community. And also to the family caregivers, who are likely to remain quite involved in eldercare for decades to come.

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?

Helping Caregivers Organize Information

Which technology tools should we clinicians recommend to the caregivers of elders?

This is the question I found myself musing on a few months ago, as I was preparing to give a talk related to technology at a Family Caregiver Alliance retreat for younger caregivers.

There are, of course, quite a lot of apps, services, sensors, and other various interesting technologies available. So many, that it’s quite hard to keep up with them all.

So instead, I decided to start by thinking of a few key areas in which I’d seen tools really help caregivers better manage an older person’s health needs.

I came up with four key categories of tools that I’ve recommended to families:

At the retreat, we discussed the purpose and benefits of using these tools. Then we talked about some options for each kind of tool, including a few apps that I’ve tried for each purpose. Because the conversation was so fun and interesting, I ended up trying to summarize the key points (and some tech options) in the series of posts linked to above. (They are on my Geriatrics for Caregivers blog.)

Tools, I might add, do not necessarily need to be high tech. In going through the options for addressing each category above, we started by talking about the pen-and-paper approach, and then moved on to increasingly specialized digital options.

It is, of course, better to have information on paper than not documented at all. (Pew found that 44% of caregivers were tracking health issues just in their heads!) But the nice thing about things like computers, the Internet, smartphones, and even some apps is that they often — but not always — make it easier for us to collect and organize information.

Still, like many things that are “good for you”, it’s all easier said than done. Getting more organized usually requires behavior changes and some effort, especially at the beginning.

Personally, I’d love to see clinicians and primary care teams be ready to help patients and caregivers with the tools above; when properly used, these kinds of information tools can have lots of benefits. Tracking symptoms and response to a treatment strategy can lead to faster resolution of bothersome health problems. Carrying around an up-to-date medication list and copies of key medical data often leads to safer, more coordinated medical care. And figuring out an approach to keeping track of what needs to get done can help caregivers from feeling too overwhelmed.

So, the potential for benefit is there. We just need to find usable tools, and make it all manageable for patients and caregivers. (It’s also nice when the information gets back to the clinicians in a form that’s easy to use.)

If you are a clinician or otherwise work with caregivers of elders, what kinds of tools have you recommended for the purposes listed above?

Sleep, Stress, and Sustaining Behavior Change

If you are interested in the non-pharmacological treatment of insomnia, an interesting item ran in the NY Times this week: “How Exercise Can Help Us Sleep Better.”

This particularly caught my eye for a few reasons. The main one is that sleep problems are a common complaint among older adults. And exercise is something that I’ve often recommended as part of an approach to improving sleep, whether the patient was a sixty-some year old caregiver, or a more elderly person with dementia.
Plus, as I’ve mentioned in a prior post, I myself have had frequent struggles with insomnia, and have sometimes applied to patients what I’ve learned from myself.
The thing is, it didn’t really seem that I slept much better on days when I got more exercise. Still, I’ve continued to recommend exercise to caregivers and frailer elders alike, given how beneficial exercise is over all. (It’s linked to better strength, better function, better mood, better health outcomes, better glucose control, etc.)
Do most of them manage to increase their exercise? Well, no. At least, not as far as I could tell, and determining how much people’s exercise levels have changed is a challenge because so far, I’ve mostly had to rely on people’s self-report, during a visit. (I’m still waiting to have a patient or caregiver use a Fitbit or other activity tracker.)
And does exercise in fact improve sleep? The Times article describes a fascinating new research study addressing this topic. 

A clinical study of sleep and exercise

To summarize: the study randomized 11 sedentary women (avg age 61 years old) with insomnia to a program of exercise 3x/wk versus no change. 
After four months, the women who were exercising regularly did have better sleep, and were sleeping on average 45-60 minutes longer every night.
But here’s the kicker: it took literally months of exercising before sleep got better. And on a day-to-day basis, most participants did not sleep better on days when they exercised. 
According to the Times article (the study’s author was interviewed), this is at odds with most research & the experience of many people, which is that exercise = better sleep that night.
However, Dr. Baron, the study’s lead author, notes that many studies of how exercise affects sleep used people who didn’t have insomnia at baseline. She goes on to explain that people with insomnia may be “neurologically different,” and have a “hyper-arousal of the stress system.” But if they maintain an exercise program, after a few months they do start to sleep better, which Dr. Baron attributes to a dampening of the stress response.
The study also found that participants exercised less on days after sleeping poorly, so in the short-term it seemed that sleep had more of an effect on exercise than vice-versa. 
The Times article concludes with Dr. Baron advising readers with chronic insomnia to start exercising regularly if they aren’t already doing so, but to bear in mind that improvements in sleep probably won’t be immediate and could very well take months.

Implications for the practice of geriatrics and general medicine

Would one find similar results if one studied a group of 85 year old women with poor sleep? And what if they had dementia? No one knows, and it’s quite possible that the results would be different since both aging and cognitive impairment are known to modify sleep patterns.
Still, these results are very important to the practice of geriatrics, because the study group sounded very similar to a population that we often work with: family caregivers.
Chronically stressed? Not enough time to exercise? Can’t sleep well at night?
Sound like anyone you know? Actually, it sounds a bit like me and other working mothers who have too much on their plate, but it also sounds like the women I see bringing their elderly loved ones to see the doctor, frazzled by the strains of worrying about a parent and taking on more and more caregiving duties.
And, the chronic stress of family caregivers is a very serious public health problem. It affects the health, wellbeing, and even workplace productivity of the caregivers themselves. Plus it often has a direct bearing on the health and wellbeing of the elderly person being cared for.
In general, stress is a huge and thorny problem in healthcare and for society. As a physician, I’ve often diagnosed stress as an important contributor to some significant health problem we’re trying to manage. But it’s very difficult to help people reduce their stress.
This study sheds some light on why: reducing one’s internal reactivity to stress takes time. A behavior change meant to reduce stress may need to be sustained for months. 
This is a tough challenge for all involved. Tired and stressed caregivers want relief now, and don’t have a lot of energy and bandwidth to stick with a behavior change for months. Clinicians want to help (and if they’ve kept up with best practices, want to help the patient minimize the use of pills for sleep or anxiety), but it’s hard to find a way to get patients to sustain behavior changes.

What tech solutions might help?

It’s not hard to envision how technology solutions might help. For those caregivers who have a smartphone or can access technology, it should be possible to
  • Log sleep and exercise. Ideally, with as little hassle as possible. Collecting this data can be helpful to clinician and caregiver when they meet to follow-up on a plan to increase exercise, decrease stress, and improve sleep. 
    • In some cases following data in real-time might help people maintain a behavior or technique (such as in biofeedback). 
    • Whether caregivers would find it helpful on a daily basis to see how much they’d slept every night is unclear to me; it could potentially be stressful to not see sleep improving as quickly as one wants it to.
  • Provide reminders and support to help caregivers maintain the exercise habit. There must be some way to leverage technology to help caregivers (or any patient/person) maintain an exercise habit, but I’m not sure which would work the best for the caregivers I work with. 
    • In fact, the multiple options available (there are so many apps/services available to help people meet fitness goals!) is a problem: making a choice is difficult!
    • Caregivers and patients would probably appreciate and value a recommendation from clinicians, but it might be hard for clinicians to make a recommendation unless it’s a product the clinician has already tried for him/herself.
      • We may also see companies aggressively market themselves to doctors, in hopes that their fitness app will be “prescribed.” I have mixed feelings about this since historically when business markets to doctors, the patients are not always well-served by the results.

In search of tech tools to try

Ok, so now let’s play a fun game called “Help-a-Doc.”
I am willing to try an app or service in the next few months to log my own sleep and exercise, and also to help me start and maintain a 3x/wk exercise habit. (And let’s see if it improves my sleep, which could stand to get better.)
If you have a recommendation to meet any of the needs above (sleep tracking, exercise tracking, and behavior change support), please post in the comments below, or drop me a line.
I’d like to eventually have some specific tools to suggest to caregivers and other non-frail adults who are struggling with sleep, exercise, and stress.

Pew Publishes Report on Family Caregivers

I’ve been a fan of Pew’s reports on health and the Internet for quite some time, but now I’m a superfan.

Just today, Pew has published a health report focusing on caregivers: Family Caregivers Are Wired for Health. Based on survey data collected in Aug-Sept of 2012 from 3014 adults, Pew found that 39% of respondents were caring for an adult or child with significant health issues.

The whole report is interesting, but here are some particular findings that caught my eye:

  • Pew’s survey found that 30% of adults were caregivers in 2010, compared to 39% now. 
    • This strikes me as a big jump; I’d love to eventually learn more about just what went into this increase. (Is an aging population and increased chronic disease burden enough to explain such a jump in 2 years?)
  • 86% of caregivers have Internet access; of those, 84% went online to research health topics. In comparison, 64% of non-caregivers with Internet access went online to research health topics.
    • I’m not surprised that caregivers are doing more research; families often seem more worried to me than patients do.
  • 39% of caregivers are helping to manage medications. 
    • The report doesn’t say how many medications they have to manage. But if you have someone else involved in your care, I’m guessing it’s a lot of medications. I’d love to eventually find out how many meds caregivers deal with on average.
  • Caregivers are more likely than non-caregivers to tap both online and offline information sources, such as clinicians, friends/family, or patient communities. Pew reports that “thirteen percent of caregivers were in contact with a clinician both online and offline, compared with 5% of non-caregivers.”
    • This is good, 13% of caregivers with access to clinical help online and offline. But we need to make it better.
  • One in three caregivers tracks a health indicator for a loved one. Of these, 44% track in their heads, 43% use paper, and 8% use an app.
    • As a clinician, I often rely on caregivers to give me the information I need to help address their loved one’s symptom. We definitely need to make it easier for them to track on paper or electronically, as this supports better clinical collaboration between patient, caregiver, and clinician. 
  • 41% of the caregivers who track end up sharing the tracked information with another person. More than half of the caregivers who track report sharing the data with a health professional.
    • This is good and I hope to see these numbers go up over the coming years. 

Unfortunately, although the demographics of the caregiver respondents are laid out, the main report doesn’t list the demographics of the care recipients. So, I don’t know just what proportion of these respondents are caring for elderly people, but presumably many respondents are caring for someone aged 65+.

All in all, this is a fascinating report and hopefully will generate some much needed attention to the need to educate and support caregivers.

If this topic is of interest to you, I’d also urge you to read Susannah Fox’s related blog post at e-patients.net, which is here. In it, she remarks

“Let’s stop there and consider: we have a large and growing group of people who are trying to conduct on-the-job training for themselves using the internet. They are more likely than other adults to have internet access and a mobile device. Many of them act like the kid who sits in the front row of every class, taking copious notes, clapping erasers for the teacher (anyone younger than 40, ask an older friend to explain). And yet if this report could be seen as a report card for how we as an online community are serving them, frankly it’s a D+.”

I myself am not sure just what grade I’d give the online community and digital health community when it comes to supporting caregivers…

But I think we can all agree that caregivers are very important, especially to those of who serve the elderly. Caregivers certainly need better support, education, and tools. This report should help spur additional attention to this essential issue.

Nice work, Pew!