GeriTech

In Search of Technology that Improves Geriatric Care

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The ePrognosis App: On Life-Expectancy & Healthcare Decision-Making

[This post was first published on The Health Care Blog on 11/22/13.]

Last month an intriguing new decision support app launched, created by experts in geriatrics and palliative care. It’s meant to help with an important primary care issue: cancer screening in older adults.

Have you ever asked yourself, when considering cancer screening for an older adult, whether the likely harms outweigh the likely benefits?

Maybe you have, maybe you haven’t. The sentence above, after all, is a bit of wonky formulation for the following underlying questions:

  • How long is this person likely to live, given age and health situation?
  • Given this person’s prognosis, does cancer screening make sense?

The first question seems like one that could easily occur to a person — whether that be a patient, a family member, or a clinician – although I suspect it doesn’t occur to people perhaps as often as it should.

As for the second question, I’m not sure how often it pops up in people’s minds, although it’s certainly very important to consider, given what we now know about the frequent harms of cancer screening in the elderly, and usually less frequent benefits.

Furthermore, there is abundant evidence that “inappropriate” cancer screening remains common. “Inappropriate” meaning the screening of people who are so unwell and/or old that they’re unlikely to live long enough to benefit from screening.

For instance, one astounding study found that 25% of physicians said they’d order colon cancer screening for an 80 year old with inoperable lung cancer. So it’s clear that improving the decision-making around cancer screening would help improve healthcare safety, quality, and value.

Enter the ePrognosis Cancer Screening app, which is the first app created by the UCSF-based ePrognosis team. It’s free in the iTunes store, and according to co-creator Eric Widera, a geriatrician and colleague of mine, it was designed to be used by the public as well as by clinicians.

The app basically works like this:
  1. You tell it whether you’re interested in screening for breast cancer, colon cancer, or both.
  2. The app asks you 15 questions about yourself, your health, and whether or not certain activities are difficult for you. (The questions are a combination of the Lee and Schonberg mortality indices; see here for the questions and relevant scholarly citations.)
  3. You are then presented with a statement on whether cancer screening is recommended, along with a nifty speedometer graphic illustrating the balance of harms vs. benefits.
  4. If you click “Learn more” you are shown a series of pictographs illustrating information on expected harms and benefits of screening, along with information on what proportion of similar people will die over the next 10 years whether or not they get screened for cancer.
  5. You can also click share and reportedly send the report to another person. (Note: I wasn’t able to get this to work for me.)

For more information on the app, including some good screenshots, you can read theGeriPal post introducing the app.

Using prognosis: From research to ePrognosis to…app?

So will the app work as its creators hope? Meaning, will it help patients and clinicians make better decisions about cancer screening in older adults? And will it reduce inappropriate cancer screening in older adults?

Prognosis is, after all, a thorny topic. Even if you can get decent prognostic information at the time you need it, going through discussions and decision-making based on this information is not easy. For instance, this qualitative study of older adults found that although most participants were open to discussing life expectancy, about a third perceived such discussions as not useful, or even harmful. (Interestingly, 64% of participants felt that their physicians could not correctly estimate their life expectancy.)

The ePrognosis project itself was meant to address the first part of the challenge: the fact that practical prognostic information is hard for front-line clinicians – and regular people — to find. Consider this: even today, UpToDate has no topic page on how to estimate life expectancy in older adults, despite many guidelines now urging clinicians to factor prognosis into medical decisions. (For a useful slideshow on why we should use prognosis, see here.)

Instead, UpToDate has a page titled “Communication of Prognosis in Palliative Care”, authored by UCSF’s Alex Smith, a co-creator of ePrognosis. This resource has terrific content on how clinicians can discuss prognosis, but because of its title, may not be easily spotted by doctors searching for a quick way to figure out life expectancy. (“How to talk to patients about how long they’re likely to live” might catch more notice among generalists.)

I myself like the ePrognosis website in concept. That said, I recently found myself sheepishly admitting to Alex that I’ve hardly ever used it. Why? Mainly because my patients tend to be quite elderly and frail, and I feel that I’m already incorporating a sense of their limited life expectancy into my recommendations and conversations with them.

And herein lies the rub: the clinicians who think of using ePrognosis, or of incorporating life expectancy into their decision-making, are probably not the ones who most urgently need to use something like ePrognosis. (Not that we’re perfect – I’m sure using more decision support would help me — but at least we’re not the type to order cancer screening on an 80 year old with inoperable lung cancer.)

In general, the ePrognosis story illustrates a common challenge in improving healthcare quality: the problems that experts see at the population level (excess cancer screening in frail elders) are experienced very differently by the clinicians and patients on the ground (clinicians and patients have historically had enthusiasm for screening).

But changing the behavior of individuals – which is what you need to improve a quality problem – is very hard, especially if people remain embedded in their usual environments. Although expert guidelines and advice do have an important role to play, it’s usually not nearly enough to counter the habits and attitudes of the people in the trenches.

Still, when it comes to better healthcare for older adults, creating the tools to calculate and communicate life expectancy is a good start. Once a tool exists, it becomes possible to see how people respond to it, refine it, improve it, and also think of how to make it more available to the right people at the right time. One could even imagine certain tools being embedded into the clinic processes that nudge clinicians and patients towards (or away from) certain actions.

Now, where do you think we should go from here, if we want to use prognosis to improve healthcare, and healthcare value, for older adults? The creators of ePrognosis are looking for feedback and suggestions as to next steps. So check out the ePrognosis website, try out the app, and share some thoughts in the comments.

I just plugged information on a current elderly patient into the ePrognosis Gagne index and it predicts a 30% chance of death in the next year. Hm… perhaps I’ll reread that UpToDate page on discussing prognosis, as this patient is due for an advance care planning conversation. That page describes a five step process for discussing prognosis.

Should that be in an app?

[There are some interesting comments on this post at THCB; add your thoughts either here or there.]

When Foundation-Approved Apps Founder

[This post was first published on The Health Care Blog on 9/6/13. Dr. Mike Painter of RWJF was kind enough to post a thoughtful response in the comments section there.]

What does it mean when an app wins a major foundation’s developer challenge, and then isn’t updated for two and a half years?

Today, as I was doing a little background research on task management apps for caregivers, I came across a 2012 post listing Pain Care as a handy app for caregivers.
Pain is certainly something that comes up a lot when it comes to geriatrics and supporting caregivers, so I decided to learn a little more about this app.
“The Pain Care app won the “Project HealthDesign” challenge by the Robert Wood Johnson Foundation and California HealthCare Foundation,” reads the descriptive text in the Google Play Store. 
Well well well! RWJF and CHCF are big respectable players in my world, so I was impressed.
But then as I looked at the user reviews, I noticed something odd. Namely, that the most recent one seems to be from April 2012, which is like 2-3 generations ago when it comes to apps.
And furthermore, the app itself was last updated in February 2011. This is like a lifetime ago when it comes to apps. 
I decided to download the app and give it a whirl. It’s ok. Seems to be an app for journaling and documenting pain episodes, along with associated triggers. Really looks like something developed by doctors: one of the options for describing the type of pain is “lancinating,” and in a list of “side-effects” (side effects of what? the pain medication one may have just taken?) there is the option to check “sexual dysfunction.” Or you could check “Difficulty with breathing.” (In case you just overdosed on your opiates, perhaps.)
The app does connect to a browser-based account where I was able to view a summary of the pain episode I’d documented. It looked like something that one should print and give to a doctor, and in truth, it would probably be helpful.
Setting snarky comments about the vocabulary aside: this app actually looks like a good start for a pain journal. But it needs improvement and refining, in order to improve usability and quality. Also, although I don’t know much about app development and maintenance, I assume that apps should be periodically upgraded to maintain good performance as the operating systems of iPhones and Android phones evolve.
What does it mean, that this app was blessed by RWJF but then has been left to founder? A quick look at the developer’s news feed reveals that the app maker, Ringful Health, has racked up an impressive array of research contracts and prestigious partnerships: NIH, CMS, Consumer Reports.
Will these alliances lead to more lasting (read: supported and improved in an ongoing fashion) products and apps that can benefit patients and caregivers? What is the measure of a successful app, from the perspective of public health authorities, and of foundations?
Clearly, this is partly about issues related to business case and funding. To maintain an app, you need money. (If you get money from active users, then you definitely need to work on keeping them happy.)
Who will pay to maintain the apps that foundations, government agencies, and public-interest agencies help start?
And what does happen to most of these apps and tech projects that win foundation awards? Would be interesting to learn more about the natural history of such apps…

ISO medication apps for dementia caregivers

I’ve been interested in apps for the caregivers of elders, but until recently I’ve also, like many physicians, been too busy to seriously research them or try them out.

(As I noted in my recent post on task management apps, selecting and learning to use an app can actually be quite time consuming.)

Time to change that. No, I’m not going to exhaustively research and review all caregiver apps on the market.

But, as I’ve been invited to give a technology talk to a local group of family caregivers later this summer, I would like to see if I can find a few specific apps or tools that are likely to help caregivers.

As this is an event specifically for younger caregivers, I’m expecting a group of caregivers that is generally comfortable with smartphones.

The care recipients, however, are primarily older adults with dementia. So this is a good match for my geriatrics background.

Which apps should I look for? I’m going to start by looking for apps that can support issues that I spend a lot of time counseling families on. As a major such issue is medication management, I’ll start my app search there.

How I usually advise caregivers on medications

I spend a lot of my clinical time both reviewing medications, and advising families on how to properly handle medications. Here’s what we usually end up discussing:
  • Maintaining an accurate and current list of all prescribed medications is essential. Older adults with dementia tend to see a lot of doctors, and have a lot of medications prescribed. Keeping track of them is crucial because:
    • Many medications have cognitive side-effects. These include sleep medications, allergy medications, overactive bladder medications, and others. (Unfortunately, although all these medications are on the Beer’s list, they continue to be often prescribed to older adults with dementia.) When an elder is getting worse cognitively, or has other complaints, it’s essential to be able to review an accurate medication list.
    • The treatment plan for any medical complaint should only be made after review of a current medication list. 
  • Keeping track of which medications the person is regularly taking is important. There is what’s been prescribed – or otherwise is on the list of biologically active substances regularly taken, many of which may be over-the-counter drugs or supplements — and then there’s what’s being taken most days. Although it can be theoretically be useful to have a log of when every single pill was taken, what is usually most useful is to start with a general sense of whether the patient is taking the drug regularly or not. 
    • For example, many older patients avoid their diuretics because they don’t want to have to pee more often. It’s important to find this out before attempting to increase the dose of blood pressure medication to bring hypertension under better control.
    • In other cases, patients are not taking a medication due to financial considerations, or concern about side-effects, or because their cousin Joe had a bad experience with it. All these issues merit a non-judgemental conversation, which can only get started when clinicians are alerted to the fact that patients are not taking prescribed medications.
  • Keeping track of how often a person takes “as needed” medications is important. These include medications for pain, for abdominal symptoms (heartburn, constipation), and even sometimes insulin. 
    • Reviewing the use of “as-needed” medication is needed to track the progression/resolution of a problem, and to inform future medication adjustments. 
    • Caregivers (and assisted living facility staff, for that matter) routinely underestimate the importance of tracking use of “as needed” medications; I know this because I often get blank looks when I ask how often an older person is requiring their “as-needed” medication.
  • Cognitively impaired older adults often need help remembering to take their medications. They also often need help refilling prescriptions. 
    • This can be a delicate matter, especially for those with only mild dementia who are often resistant to supervision or assistance from others. Still, it’s a real problem.

App features to support dementia caregivers

Given that I find myself repeatedly discussing the above issues with dementia caregivers, I’ll be looking for apps that can support caregivers and clinicians in these arenas. Specifically, I’m looking for apps that:

  • Make it easy for families to maintain an accurate and up-to-date medication list. Ideally this would be easy even if the patient sees multiple providers or uses multiple pharmacies (both situations are common among the elderly). It should also be very easy to enter medications and dosages, as well as update the list.
    • What I really hope to find are apps that don’t require laborious  manual entry of long drug names and dosages. If I can snap a picture of a check, why can’t caregivers snap a picture of their prescriptions and have the medication entered into their list?
  • Make it easy for families to share the list with clinicians. I once had a young caregiver hand me her smartphone, so that I could copy the medication list. Which of course was not formatted for the use of clinicians. (All the meds were organized by “morning meds,” “noon meds,” “evening meds,” which is handy for the caregiver but a pain for the busy clinician.)
    • At a minimum, it should be easy to print a medication list that can be handed to a clinician. Paper is not yet so outdated; every doctor’s office is equipped to scan paper and enter into its electronic record system. 
  • Make it easy for caregivers to track the use of “as-needed” medications. A good tool should treat “as needed” medications differently from the others on the list. I would love to find something that encourages caregivers to note when these “as needed” medications are used. 
    • Bonus if the tool includes a little text field so that caregivers can note how the patient felt after using the medication. (We clinicians need to know whether we are getting successful symptom control or not.)
    • Big bonus if the tool can summarize how much “as needed” medication was used over a given interval, either via text or graphic. I have in the past had caregivers keep time charts to track when they gave pain medication for an elderly person with advanced arthritis, and then found myself laboriously counting how many doses in a day, in a week, all in order to adjust the person’s long-acting pain medication. Surely tech tools can make this a little easier for all involved.
What about features to remind a person to take their medication at specific times of day? I’m interested in this too, but honestly it’s less of a priority to me. This is because I’ve found that when it comes to helping an elder take daily medications, the physical set-up and the establishment of a daily routine end up being very important. Would a dinging device three times daily also help? Maybe. But it’s not what I most want to find for caregivers at this point.
Needless to say, any medication tool for use by older adults and caregivers should be usable by those who have 10+ medications on their list.
Last but not least, I’d like to find tools that are available for both iPhone and Android.
If you have come across any medication apps or tools that you think might meet my criteria, please comment or send me an email.

Task apps for organization: Lessons learned

I’ve been wandering in the wilderness of task management apps lately, looking for the promised land of effortless organization and helpful reminders.

Now, these apps and tools have not been designed specifically to help me keep track of how I’m trying to help a patient, nor have they been designed to support caregivers. (These are two areas of need that I hope tech tools will be helping me with soon.) Still, I’ve been finding the experience very instructive. 
It’s been mildly surprising to realize 1) how hard it was for me to settle on a task management app, and 2) the effort it has taken for me to become reasonably competent in using it. In fact, despite having some previous familiarity with task management programs, I ended up using the help of an expert to both pick my task tool, and coach me on using it effectively.
Funny how it’s really not so easy to have apps improve your life.
Anyway, here’s the story, and the lessons I’ve learned so far. As I believe that many caregivers of elders could in principle benefit from apps that help them organize themselves, I found myself thinking often about caregivers as I underwent my own app discovery journey.

A need for a task management app


A few months ago, I decided it was time to upgrade the way I organize myself and my time. Like many professionals with young children, I have a lot to juggle both at work and at home. And I’ve long believed that the right tools and systems can go a long way in helping one get more done, with less stress.
Several years ago I’d read David Allen’s “Getting Things Done,” and had subsequently tried using Toodledo to keep track of things. But, I’d fallen off the wagon. Let’s face it: remaining organized requires some time and effort and is basically a minor-to-moderate chore. And things that feel like chores are hard to stick with. Furthermore, I’d switched from an iPhone to a Blackberry, which made it hard to use a task organizer on the fly. So the task list languished for a few years.
But this year, I found myself getting first a tablet (partly in hopes that I’d find apps to help me with various aspects of life and work), and then an Android phone. Especially since I’d been thinking about how to keep track of a person’s healthcare needs, I decided it was time to give productivity apps another go. 

The struggle to decide which app to use


Which app should I use? Which is best? I Googled the question and found way too many answers. I asked a tech-oriented friend and she suggested Any.do. I found this Lifehacker article on the subject: still too many choices. I found another blog post detailing someone’s lengthy process trying several task tools (he does a good job articulating the story of compromise which is picking a task management app), and wondered if his information was outdated.
I asked someone who works as a small business coach and he said he’s given up on trying to keep up with the proliferation of such apps; he just uses a combo of Google Calendar and Google Tasks. 
Days went by. I ended up downloading probably a half-dozen apps. None seemed perfect. Some had better design. Some had better features. The one I initially liked turned out to be buggy and didn’t sync well with its web version. Another recommended stalwart came only in a dark color palette that I found depressing to look at.
After several days of tinkering with various apps, I felt I’d developed a better sense of what kinds of features were now available, and I’d started to prioritize my preferences. But, I still couldn’t decide which app to commit to. In fact, I was starting to feel a little stressed out by my search for an organizational app to help de-stress me.

The help of experts


What to do when you’ve done some research and find yourself a bit overwhelmed? It certainly helps to find an expert to provide some guidance and a path forward.
In my case, while googling reviews for one of the task management apps, I stumbled across a handy productivity software comparison chart, created by a company called Priacta. Priacta, it turns out, coaches people on how to become better organized and more productive, including step-by-step guidance on how to integrate popular task management tools.

Initially I used Priacta’s website as a convenient reference of task management apps. However, after realizing that I was still struggling to definitively pick an app, I decided to take Priacta up on their offer to “Call a Coach!” for a free 20 minute session of advice.

This was extremely helpful. It turns out that talking to a knowledgeable human being can help bring clarity to an excess of information and choices. The coach asked me some questions about my needs, summarized the pros and cons of a handful of products, and ended up recommending I choose between two particular products. He also suggested I consider their online training program for $79.

I tinkered with my two choices, and decided to go with Astrid. This was not a product that I’d initially ranked highly (despite several good reviews online), but Priacta thinking it might work for me carried a lot of weight.

Also, I went for Astrid because it’s one of the task management tools that Priacta’s online training program provides step-by-step instructions for.

And by this time, I’d decided that it probably WAS worthwhile for me to spend $79 on something that would systematically teach me 1) a organizational strategy, and 2) how to use the specific tools I wanted to use (namely Astrid and Google Calendar).


So I went through the online training and overall I found it to be quite helpful and effective. It did take several hours, which I spread over several days. I also, in the midst of the training, decided to upgrade and get an additional session by phone with a live coach. I did this not because the online instructions weren’t clear, but rather because I found myself encountering some anxiety and resistance as I tried to implement better organization techniques. (Reportedly this is quite common in those who attempt to reorganize and have to face scary piles on their desk.) And again, I found the input of a live, knowledgeable human being immensely helpful. Plus, the coach remotely logged into my computer, took a look at my list, and advised me on how to better organize it. Cool!

The result of all this effort so far? I now feel very confident in my ability to use Astrid to keep track of my tasks. There are some other aspects of the organizational strategy that I’m a little less sure I’ll be able to stick with, but I’ll see how things go. (The online training does come with three weeks of “accountability,” during which one receives daily emails and little refresher lessons.)

Lessons learned


Here are the lessons I’ve drawn from this experience so far, and some implications for successfully using apps to support caregivers in doing what needs to be done to maintain an older person’s health.
  • Developing a good task management app appears to be really hard. David Allen articulated his iconic “Getting Things Done” (GTD) task and time management principles in 2002. It’s now over ten years later; you’d think this is a mature market, no? In fact, although many apps claim to make it easy to apply GTD to your life, you can see that the developers are still struggling to figure out an approach that works for most people. Obviously it’s a taller order than it seems.
    • My guess is that this is because these apps are trying to 1) help people organize complex information effectively and 2) support behavior change. Humans being as they are, these are two formidable challenges.
    • I expect that those designing apps to help caregivers organize will run into similar difficulties in designing tools that are usable, attractive, and effective.
  • Choosing among apps is really hard. We live in a world in which we have many choices. Which means that making a choice can be a lot of work. In the case of task management apps, I found that each app had strengths and weaknesses. So to pick an app, I had to both learn something about my own needs and preferences, and I had to start identifying the pros and cons of each candidate. Hard work.
    • For task management apps in particular, there seemed to be a trade-off between simplicity (which makes it easier to learn to use the app), and features (which make the app more powerful, customizable, and possibly better able to organize complex information).
    • I expect caregivers will struggle to choose among multiple available apps.
  • Expert guidance is very valuable. It really helps to get advice with someone who can learn a little about you and your needs, and then apply their expertise to help you make decisions and reach your goals. (Wait, this approach sounds familiar…oh right, it’s how I think PCPs should approach their work.) This isn’t to say that one shouldn’t do some research and take advantage of all the information available online. But in the end, the timely advice from a knowledgeable expert can help one make a decision and move forward.
    • Caregivers would benefit from being able to access someone who can advise them on which apps would be a good fit for them. 
    • I would not expect doctors to be good at this (not even geriatricians); a suitable expert would actually need to spend a lot of time keeping up with available apps and also probably coaching caregivers on their use (how else will the expert know if the app truly works well for the intended purpose?)
  • Training on how to use an app is very valuable. Apps are of course designed to be easy to use. Still, I found that in order to be effective doing something complex (and organizing all one’s tasks is in fact a very complex endeavor), I needed a step-by-step curriculum. I consider the money and time invested in my online course very well spent.
    • Caregivers will benefit from step-by-step instructions to help them learn to use a task tool. 
    • A well designed online training program could be offered either by the app’s developers, or by an organization that specializes in teaching caregivers to use these tools effectively. (Personally I prefer the latter approach, since seems better to not have the coaches too invested in promoting the app itself.)
  • A little human encouragement goes a long way. In these days of cost and quality control, there is certainly something to be said for a nice, well-designed online curriculum. It’s a standard product (not subject to endless human-created variation in delivery and quality), and once created, can be easily made available to millions. And yet, I found it extremely helpful to get a little extra advice and encouragement from a live human being at a few key points in my quest to benefit from a task management app.
    • A cost-effective approach to teaching caregivers to use apps could similarly blend an online curriculum with a little extra human assistance.

Summing it up


I found it surprisingly difficult to select and learn to effectively use a task management app. The challenges included sorting through the available choices, trying to determine which choice was best suited to my needs and preferences, and learning to use the tool effectively in order to really benefit from the app.
Ultimately, I used advice from an expert consultant to finalize my choice, and I used an online training course to methodically teach me to how to use the app as part of a task/time management approach. I supplemented the online course with a little extra phone consultation with a live coach. This allowed me to have a slightly customized learning experience, plus helped me get past some of the challenges of behavior change.
Apps to help the caregivers of elders are in their infancy. We can probably help caregivers leverage apps more effectively if we learn from our collective experience with task management apps. Based on my own experience, I expect that caregivers will benefit from help selecting an app, from step-by-step trainings in using the apps, and from the advice of expert consultants.

[Disclosures: I have no financial ties to Astrid, Priacta, or any other company mentioned in this post.]