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In Search of Technology that Improves Geriatric Care

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Dispatch from Medicine X: e-patients & geriatrics

This weekend I’m at the Medicine X conference in Stanford.

It’s quite an experience and soon I’ll be writing more about what I’ve seen and learned here…Dr. Larry Chu and his team have created something unique and inspiring, and I hope other academic conferences will eventually incorporate some of his innovations. (More on those soon!)

For now, let me say that one of the many highlights has been meeting so many e-patients, some of whom I’d already gotten to know via Twitter and the Society for Participatory Medicine (which I joined last December).

Now, as some know, I’ve been interested in educating and empowering the caregivers of elders for many years.

Today, e-Patient Dave deBronkart was kind enough to sit down and talk to me about how we might bring the e-patient vibe to geriatrics.

Technology is truly amazing: he recorded us with his iPad, sent it up to YouTube, and voila!

Now who’s going to help us support e-caregivers for elders, and older e-patients with multiple chronic illnesses? We have ideas but we’ll need help…

Patient Engagement: On Meaning & Metrics

[This post was first published on The Health Care Blog on 9/12/13, where it generated some interesting comments.]


What is patient engagement?

Everyone agrees that it’s a good thing, and that we healthcare providers should be fostering it.

How to do so, however, depends on just what you believe patient engagement means.

As Dan Munro recently pointed out, the term “patient engagement” is a hot buzz phrase, and – in the best tradition of such phrases – it’s amorphous enough and appealing enough to mean…just about anything.

Provided that it that makes us feel good about healthcare, of course. Better yet, provided that it casts our favorite healthcare approaches in a favorable light. (Rob Lamberts nicely summarizes some angles of the term here.)

I actually rather liked Munro’s post, titled “Patient engagement: Blockbuster Drug or Snake Oil?” until he got to this part: “We now have some very real metrics around what constitutes real patient engagement and Leonard highlighted two impressive examples.” He goes on to point to two studies of care coordination for chronic illness — one at Kaiser and the other at the VA – and summarizes some key improvements in outcomes.

At Kaiser, they included things like decreased mortality rates and fewer emergencies, as well as improved cholesterol screenings and more people meeting cholesterol goals. With the VA’s Telehealth program, hospital days were reduced and patient satisfaction was 86%. (BTW, I had a VA primary care clinic from 2006-2010, and several of my patients were in Telehealth.)

These are indeed nice results. Still, somehow they didn’t impress me as constituting “real patient engagement.” They seemed more like “real population health management, facilitated by teams, care coordination, communication infrastructure, and organized protocols.”

Shouldn’t real patient engagement mean more than this?

Defining patient engagement

Here’s my current take:

Supporting patient engagement means fostering a fruitful collaboration in which patients and clinicians work together to help the patient progress towards mutually agreed-upon health goals.

Quite a mouthful, eh? Ok, if I had to pick out the most important parts, I’d say they are

  • Collaboration, which means working together effectively.
  • Agreed-upon health goals, which means each side understands what the other hopes to get out of their work together.

In other words, to truly foster patient engagement, it’s not enough to just work together more closely on achieving a given health outcome. It’s also important to work together on deciding which outcomes to pursue, why to pursue them, and how to pursue them. In doing so, we engage patients in a meaningful care partnership that respects their priorities, preferences, perspective, and situation.

Communication with patients is, of course, essential to all of this. This is why any innovation that improves a patient’s ability to access and communicate with healthcare providers is proudly labeled as “patient engagement.”

Also, communication technologies do facilitate data exchange, and can help patients implement a plan. So for instance, the VA’s Telehealth program made it easy for veterans to regularly report home measurements such as weight or blood pressure. And these readings were reviewed by trained nurses, who would call my patients if data entry stopped, or if a measurement triggered some kind of alert.

All good stuff. But not enough, in my mind, unless we’ve also made some efforts to support communications such that the patients understand – and get to weigh in on — how our clinical efforts are serving their health needs.

Otherwise, these improved communication technologies just become a better way for us to tell patients what to do, and help them do it. I suppose this does improve patient engagement if we define it as more contacts with the healthcare system, or as decreased utilization which will surely make the payers happy.

But I would like to see us strive for more of a joint problem-solving partnership with patients. Patients are, after all, the experts on how their health problems affect their lives. And it is in tapping, and nurturing, that expertise that we’ll be most likely to improve their health in ways that are most meaningful to them.

This, of course, becomes especially important in geriatrics and for those patients with multiple chronic illnesses. Their medical complexity mandates that care be individualized, and that they actively participate in this tailoring of their care. (Dr. Larry Weed, as I noted in my commentary on “Medicine in Denial” really gets this; his book is good reading if you are serious about getting healthcare to better serve patients.)

The trouble is, historically we’ve not done a good job in medicine of involving patients in setting goals; usually clinicians have assumed they know what’s best for patients. Clinicians have also often not had the time — or sometimes the interest — to understand what is feasible or desirable to the patient.

The advantage to this approach is that it’s fast; negotiating a mutual understanding takes time, after all. High blood pressure? Here’s a prescription for HCTZ. And maybe a handout on low-salt diet. Next!

For certain patients, this approach can actually lead to decent medical outcomes. This is assuming that the clinician’s directive is supported by the evidence, is feasible for the patient to implement, and is in fact a suitable match for the patient’s goals and medical situation. (Reducing blood pressure will probably have more benefits – and be less burdensome – in the average 50 year old than in a frail and declining 93 year old.)

But what about when high blood pressure treatment – or reaching cholesterol goals, for that matter – isn’t what’s most important to the patient? Sometimes other issues, such as pain or incontinence or memory problems or anxiety about prognosis are what’s most important to a patient.

Shouldn’t “real patient engagement” address what’s really important to the patient?

Metrics of engagement

Back to the examples of patient engagement cited above. What are the “right metrics around what constitutes real patient engagement”?

Obviously, it will be difficult to agree on metrics if we don’t first agree on the definition.

If you buy into my definition, then the relevant metrics would need to measure things like the patient’s understanding how a given intervention was going to help him or her with her health goals, and how well the intervention fit in with the patient’s health needs overall. It would also be nice to measure things like increased feelings of self-efficacy in managing one’s health, or confidence that the clinical team is being helpful.

But from the description of the Kaiser and VA programs mentioned above, we really don’t know how the patients felt, and whether being in these programs helped them feel like active and empowered participants in their care. (Or helped them feel that their clinical teams understood their health needs and were collaborating with them.)

In truth, I suspect that my definition of patient engagement will probably not be widely adopted by those with clout: the big health providers, the payors, and the pundits. From the perspective of the providers, my guess is that patient engagement will mean things like:

  • How often does the patient contact/connect with us, especially when we want them to?
  • How often does the patient behave as we would like them to?
  • How much does the patient like us, and bring us their business, and – most importantly – do they give us good ratings on surveys and talk us up on social media?

(Check out this Patient Engagement Index that ranks Florida hospitals.)

For the payors, I expect patient engagement will mean care coordination programs and other innovations that result in lower utilization. Money, after all, does make their world go around.

As for the pundits…likely will depend on who is writing for whom. For example, here’s arecent sample of what we’re likely to keep reading: “[The iPad] allows medical professionals to work on a device of their choice taking patient engagement to the next level.” (Hm. Somehow doctors having mobile connectivity is going to get patients more involved in healthcare.)

In other words, engaging patients – in the strict sense of more contacts and encounters with patients — doesn’t automatically mean that the patient’s needs and experience are central.

Sounds like most of medicine. Still, these care coordination programs and increased opportunities for patients to communicate strike me as progress in the right direction.

I’m just not going to call it “real patient engagement” unless I think it helps clinicians collaborate with patients to meet their health goals.

Summing it up

If we are to foster “real patient engagement,” then we will need to be more specific about what it is, so that we can agree on what kinds of metrics or outcomes demonstrate it.

To me, supporting patient engagement means fostering an effective collaboration in which patients and clinicians work together to help the patient progress towards mutually agreed-upon health goals.

This collaboration should work towards medical outcomes that the patient understands and has had an opportunity to help determine. This helps ensure that the medical care truly serves the patient’s needs, priorities, and preferences.

Otherwise, to leverage improved communication and access in order to get patients to reach the health outcomes prioritized by clinicians basically means we’ve become more effective at getting patients to do what we want. This might result in improved health outcomes for individuals and populations, but falls short of what we could and should aspire to: helping patients meet their health goals.

If we want patient engagement to mean collaboration on mutually-agreed upon health goals, we will need to find effective ways to measure the quality of this collaborative process. Documenting reduced mortality and morbidity is not enough.

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?

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…

Creating Conditions for Humanity in Hospitals

[This post was first published on The Health Care Blog on 8/25/13.]

Why aren’t people in hospitals more attentive to the needs of patients?

In a recent post, Dr. Ashish Jha raises this issue as he relates his own story of coming to an ED with a very painful dislocated shoulder. Unsurprisingly, prompt treatment of his pain was deferred while staff diligently completed registration, sent him for an xray, and waited for a physician to see him.

On the bike path where Jha took his initial tumble, people went out of their way to respond to his injury with attention and concern. But as he lay moaning on a gurney in the hospital corridors, waiting for an xray and not yet treated for pain, people avoided his eyes and even walked by a little faster.

What gives? Why aren’t people in the hospital more empathetic and attentive? Is this a “wonderful people, bad system” issue?

In reflecting on his experience, Jha remarks that people seem to leave their humanity at the door when they arrive at the hospital for work, and posits that we get desensitized to suffering. He notes that some workers were able to “break out of that trap,” and responded to him more empathetically when he directly solicited their help and attention.

“It is the job of healthcare leaders to create a culture where we retain our humanity despite the constant exposure to patients who are suffering,” writes Jha.

Culture change is necessary but not sufficient

Culture is important. Yet I’ll admit that I’m usually a bit skeptical when I hear of a plan to tackle a problem through culture change. In my own experience, this has consisted of leaders trying to “create culture” by describing to front-line staff what they should be doing, and repeatedly exhorting them to do it. (And maybe giving out gold stars to those who do it.)

This, of course, is never enough. Talking the talk does not mean people start to walk the walk, especially if the walk involves a slog uphill rather than an easier stroll down a path of lesser resistance

If we – whether healthcare leaders or just concerned citizens who want to see healthcare improve – really want healthcare workers to demonstrate more compassion and empathy while on the job, then here is what we need to do:

  1. We should take seriously the task of understanding what might be interfering with this compassion and engagement. This means not only studying workflow, but also the behavioral psychology of individuals as well as groups.
  2. We should then be serious about creating the conditions that would allow regular human beings to reliably produce the desired behaviors.

Why it can be hard to help people in the hospital

What interferes with showing compassion and engagement? In reading Jha’s piece, I reflected on my own hospital days. Here are the obstacles that I remember, and the impact on me.

Difficulty meeting the needs of patients and families. I remember constantly feeling that people needed more from me than I could provide. Sometimes they needed to talk for more time than I felt I had available. Or they needed a service or other form of assistance that I wasn’t sure how to get for them.

Especially frustrating was when patients needed something like pain medication on short notice. I have been that doctor very concerned about a patient’s terrible pain. Unfortunately, I discovered that my power to help was quite limited by hospital logistics and workflow: although I could order pain meds right away, the patient could almost never get it quickly. After all, the pharmacy still had to dispense the medication, and the nurse had to administer it.

If you are a conscientious person who wants to help (which I think most healthcare workers are), it’s very stressful to recognize a person’s need and not be able to address it.

Hence, as a coping mechanism, my guess is that many people working in hospitals adapt by learning to “not see” those needs that they feel they can’t address promptly and properly. (Perhaps we might consider this a form of learned helplessness?)

That ED doc that Jha praises for addressing his shoulder quickly? He sounds like a good guy, but it also helps that he had the skills and ability to do something right then and there.

Frustration with workflows and workplace tools. It’s no secret that hospitals and clinics often present a “high-friction” environment for front-line staff. Back when I worked in the hospital, every day involved coping with inefficient workflows that generated various levels of annoyance. There was redundant paperwork. There were computers requiring multiple sign-ins, or repeated sign-ins. There were tasks that took three steps when they really could’ve been redesigned to take one or two.

Along with the expected hassles, one also had to contend with frequent malfunctions in whatever system you were trying to use. A printer out of paper. A computer that mysteriously can’t be logged into. A shortage of staff in a certain department, such that a routine inquiry ends up taking twice as long as usual.

To be fair to hospitals, designing friction-free workflows for clinical staff poses a huge challenge, given the complexity of the work involved and the diverse needs that hospital administrators need to consider. And the nature of life is such that often things do not work as expected.

Still, it all added up to a fair drain on one’s energy and attention, and made it harder to provide patients and families with attention when they needed help.

Inadequate levels and reserves of energy. Compassionately interfacing with patients takes energy, especially if pain or emotionally intense issues are at hand. If one is worn out by earlier encounters, or by a long workday, it becomes much harder to muster the energy to engage with those who need us.

And of course the energy one can bring on any given day is powerfully influenced by the overall balance of exertion and regeneration that one experiences over weeks and months. Long workdays stacked back-to-back (as experienced by many hospitalists) take their toll. Young children at home, or other significant obligations outside the hospital, can also reduce one’s energy at work.

On the flip side, certain activities help people regenerate and restore their energy. Adequate sleep, exercise, and close relationships with friends and family are sustaining staples that are needed by all. Plus everyone tends to have some favorite soul-nurturing activities that help recharge the batteries.

For physicians in particular, the problem is that residency tends to leave people with little time to recharge. We form our habits as doctors during a time of chronic stress and fatigue.

And even after residency, many physicians end up with chronically intense work-schedules. What effect does this have on their ability to be compassionate and responsive to patients and families?

My own experience has been that when I work long hours, it feels much harder to give people the support they want. I still try to do it but I suspect I do it less well. I also know that when I’m tired I make an extra effort with patients but then have much less patience with other members of the healthcare team. (And then when I come home I’m short-tempered and crabby with husband and kids; not necessarily a problem for hospital and patients but concerning to me.)

    Enabling humans to show humanity

    Cultural expectations within institutions and groups are powerful. We do take our cues from peers and leaders. But it’s hard to follow the cues when surrounded by pervasive stressors and obstacles. In fact, it can be demoralizing to be told to do something when your leaders don’t seem to be making enough of effort to enable this doing.

As healthcare leaders take on the important task of making hospitals more responsive to the needs of patients and families, I hope they’ll consider the following:

  • People don’t like being faced with situations that they can’t fix, or that they feel will be a huge time/energy suck to fix. 
    • Make it easier for them to do the right thing.
    • Recognize when you are asking them to do something that is a big time/energy suck. 
    • Try to give them more time. Realize that they’ll have less energy afterward for efforts that are cognitively or emotionally demanding.
    • Provide communication and empathy training. Without explicit training, people often don’t realize that patients and families appreciate sympathy and attention, even when you can’t solve the exact problem at hand.
  • Frictions in the workplace add up to material stress and depletion of energy.
    • Reducing these frictions can enable workers to be more responsive to the needs of patients (and colleagues).
    • Adapting to changes in the workplace — such a new computer system or workflow — does create a drain on staff’s energy and attention. Ideally, this is temporary but poorly designed changes often create permanent energy drains.
  • Be mindful of the overall energy and stress levels of your workers.
    • Workers who are already experiencing chronic stress and fatigue will have difficulty becoming more attentive to patients’ needs.
      Now, if you told me that healthcare leaders already know all this, I wouldn’t be surprised. If you’re in a leadership position, it’s really part of your job to learn about managing human capital.

      The trouble is that for the leaders of a hospital, addressing the obstacles that I experienced in the hospital feels costly to them. It takes time, energy, and money to reduce workplace frictions. And managers are generally very reluctant to reduce a person’s workload in order to free up cognitive and emotional energy so that the worker can then be more responsive to suffering patients, or even adapt to new technology for that matter.

      In principle, these investments in nurturing one’s human capital should pay off down the line: more satisfied patients, less worker absenteeism, better teamwork among colleagues, and possibly even fewer hospital errors and better health outcomes among patients and staff.

      Will healthcare leaders find a way to walk their own uphill path, and really make it possible for their front-line staff to do better work? I hope so.