GeriTech

In Search of Technology that Improves Geriatric Care

Props to RWJF for Improving #CultureofHealth, & the power of social media

In my last post, I explained why I felt that #CultureofHealth wasn’t quite working for me, and I proposed that we try to brainstorm complementary memes.

In particular, I was concerned that an intense focus on “being healthy and staying healthy” might not offer enough support to those who struggle with illness, or to clinicians whose work it is to care for “sick people.”

The CEO of the Robert Wood Johnson Foundation, Dr. Risa Lavizzo-Mourey, was kind enough to write a response on THCB, and several people commented on both posts.
Furthermore, on October 17th, Dr. Lavizzo-Mourey posted a comment announcing that RWJF had made some tweaks to their message, to better clarify that a Culture of Health includes everyone, “be they sick or well.”
I am, of course, hugely grateful to RWJF for taking the time to thoughtfully consider the issue. 
I’m also especially grateful to those who took the time to comment and relay their own reactions to RWJF’s previous definition of a Culture of Health; I’m sure this input was vital to the process of considering the Culture of Health messaging.
In this post, I want to share the “tweaks” so far in defining the Culture of Health. I’ll also share some of the complementary meme ideas I heard from other people this month. And then I’ll close with some thoughts on the power of blogging and social media.

Culture of Health before and after

“We believe an American Culture of Health is one in which:

  1. Good health flourishes across geographic, demographic and social sectors.
  2. Being healthy and staying healthy is valued by our entire society.
  3. Individuals and families have the means and the opportunity to make choices that lead to healthy lifestyles.
  4. Business, government, individuals, and organizations work together to foster healthy communities and lifestyles.
  5. Everyone has access to affordable, quality health care.
  6. No one is excluded.
  7. Health care is efficient and equitable.
  8. The economy is less burdened by excessive and unwarranted health care spending.
  9. The health of the population guides public and private decision-making.
  10. Americans understand that we are all in this together.”
As I said, other people’s comments provided truly vital input to the conversation. I especially want to highlight Dr. Peter Elias, a remarkably thoughtful primary care physician who I know through the Society of Participatory Medicine. He commented:

“[This] talks about being and staying healthy, but doesn’t speak to the people who are ill and struggle for even some improvement in health, let alone those who just want dignity and comfort because health is no longer an option for them. 

I think I understand the intent: a society that values the things that foster health. But the message I hear (and my patient heard) is that health is not just the goal, but the only acceptable state. That’s pretty hard on the ill. It lends itself to a culture of blaming patients for their misfortunes, something I see on a regular basis. 

How does a dying patient related to a culture of health? Probably by feeling alienated, disrespected and disposable. How will clinicians behave in a medical culture of health? Will they be unwilling to care for patients who cannot become healthy or do not try hard enough (by someone’s definition) to get healthy? 

I fear that a culture of health would make it less acceptable to care about those who are not healthy.”

Again, it is a HUGE credit to Dr. Lavizzo-Mourey and RWJF that they really took these comments under consideration. They could have ignored me and Dr. Elias and kept doing what they do, and we all still would have mostly kept loving them because their foundation plays a vital role in improving health and health care.
But instead, RWJF made some modifications. And here’s how they are now defining a Culture of Health:

We believe an American Culture of Health is one in which:

  1. Good health flourishes across geographic, demographic and social sectors.
  2. Attaining the best health possible is valued by our entire society.
  3. Individuals and families have the means and the opportunity to make choices that lead to the healthiest lives possible.
  4. Business, government, individuals, and organizations work together to foster healthy communities and lifestyles.
  5. Everyone has access to affordable, quality health care because it is essential to maintain, or reclaim, health.
  6. No one is excluded.
  7. Health care is efficient and equitable.
  8. The economy is less burdened by excessive and unwarranted health care spending.
  9. The health of the population guides public and private decision-making.
  10. Americans understand that we are all in this together.

This, in my mind, is a big improvement.

Now, having just read Atul Gawande’s new book (which is mostly about supporting the well-being of aging adults during their last years of vulnerability, even though it is being hyped as an “end of life” book), I am very much thinking about how do we make sure the healthcare system offers older adults more of the right care and less of the wrong care.

And I can’t say that the points above — or the Culture of Health mantra for that matter — provide a lot of guidance. Instead, I’m feeling much more inspired by the Lown Institute, who recently emailed me the following statement:

“We are assembling a national network of impassioned medical students, residents, senior clinicians, patients and community groups who have joined us in building the RightCare Alliance, a movement dedicated to ensuring that human presence is central to scientific ministrations. Members of the RightCare Alliance are creating programs for transforming medicine, by addressing issues of overuse and underuse of our existing healthcare system and working to ensure that the heart of medicine is preserved over the business of healthcare.”

(Sign me up!)

In truth, the scope of what health, health care, and healthcare cover is likely too big to be adequately represented by any one meme, or even 10 point bullet list.

There is addressing upstream health factors, there is getting people to adopt healthy behaviors, there is the patient-healthcare system interaction when someone relatively healthy comes in with an acute problem, there is the the hard work of helping people manage their chronic illness for decades, and then there is my favorite work: helping aging adults with multiple medical problems make the most of their health and their situation. (Plus there are hospitalizations, surgeries, rare diseases, and even the possibility that much of how sick or old we feel is being driven by our mental attitudes.)

At this time, as best I can tell, RWJF is not focusing on either aging or the optimal primary care of aging adults with multimorbidity.

That’s ok. We all have our piece of health care (and healthcare, which I define as the professional services often covered by insurance) that we are going to work on.

We just may need to be more clear in the future, in specifying which part of health care we are talking about, in order to focus on the right memes and priorities.

Complementary meme ideas

Several people endorsed “Culture of Care,” but here are some others that came up during the #CultureofHealth conversation:
  • “Care can be complicated, but then so can people”
  • How about: “Wellness didn’t work out…now what?” or “Prevention: the things you do before you get sick.”
  • #cultureofcare also communicates more partnership opportunity, IMO.
  • “Collaborative Team”
  • #Cultureoflove
  • #CultureofCaring
I myself brainstormed several in the comments thread (which no one really responded to but I’ll share them here anyway):

  • Culture of Caring & Better Health
  • Culture of Optimizing Health & Wellbeing
  • Culture of Comprehensive Health Care
  • #CultureofBetterHealth
  • #BetterHealthBetterCare
  • #CultureofHealth&Care
If you particularly like any of the above, I hope you’ll speak up in the comments below.

In closing: the power of social media

Obviously, this whole affair is a testament to the power of social media and the public conversations it enables. 
Before the blogging era, a small fry such as yours truly could never have had her opinion heard by the leadership of a big foundation. Blogging and social media also make it easy for others to add their opinion. 
After all, a blogger’s work matters the most when it 
  • Gives voice to what many others were thinking, but didn’t have the time or capacity to say prominently.
  • Sparks constructive conversations among a group that might not otherwise be talking to each other.
It also helps to have a bigger blog give you a microphone, and I’m indebted to Matthew Holt and John Irvine of The Health Care Blog for enabling me to share my thoughts with a much bigger audience than I’d ever reach on my own.
The morals of the story: 
You can’t make change alone. 
Conversations are important. 
Social media facilitates those conversations, and can allow small players to be heard by big players. 
It is hard to capture everything we want in health care with a single meme.
Comment. Tweet. Blog. Make change.

Why We Need a Complement to #CultureofHealth

[This post was very recently published on THCB and RWJF’s president has already posted a response. Esp if you are involved in the care of older adults or people who are medically complex, please consider posting a comment at THCB. Memes can be very influential, especially when they are promoted by major organizations. I hope you’ll weigh in on the conversation!]
Last week, I attended the Fall Annual Health 2.0 conference. There was, as usual, much talk of health, total health, and of extending healthy years. 

And this year, there was a special emphasis on promoting a “Culture of Health,” a meme that has become a centerpiece of the Robert Wood Johnson Foundation’s work.

So much so, that when I approached a conference speaker, to briefly comment on my interest in helping beleaguered family caregivers with their carees’ health and healthcare issues, I was advised to work on promoting a culture of health.

Hm. Funny, but as a generalist and geriatrician who focuses on the primary care of older adults with multiple medical problems, I’d been thinking more along the lines of:

  • Promoting the wellbeing of older adults and their caregivers.
  • Optimizing the health – and healthcare — of my aging patients.
In other words, I’d been thinking of a “Culture of Care.”

As in: “I care about how you are doing, and I will provide care to help you with your health.”

Since all my patients have multiple medical conditions, that care means finding ways to help them with their many health concerns. These include diseases, such as diabetes, COPD, heart failure, and Alzheimer’s, as well as “problems,” such as pain, falls, depressed mood, and worrying about whether some recent snafus are a sign of dementia.

It even includes issues like tense relations with anxious children who think Mom should move to assisted living; a common “relationship issue” that inevitably tracks back to the present and future state of Mom’s underlying health problems.

My work, as a doctor, is to collaborate with my patients in order to minimize symptoms, maximize function, improve wellbeing, and prevent health complications. All of which, if I do it well, generally ends up helping their family caregivers.

Is promoting a #CultureofHealth the same as promoting a #CultureofCare? As a front-line clinician, they feel very different to me.

Namely, one strikes me as about working way upstream to prevent health problems before they happen. (“We shouldn’t need a sick care system!”)

And the other is about responding to people who are suffering, and need our help to feel better. No, this is not the hallowed work of preventing chronic diseases from emerging. But it is preventing – or at least delaying — further deteriorations in health and function. It is helping people make the best out of the situation they are now in.

If you are working with people who are already downstream, and are coping with the burdens of chronic illness, should your priority be #CultureofHealth? Or #CultureofCare?

Consider, for instance, the family described in Knocking on Heaven’s Door. If Katy Butler’s parents, struggling with cognitive impairment and progressive decline in the aftermath of a stroke – and this after a lifetime of “healthy living” – ask their primary care doctor for help, is he more likely to offer the right assistance by thinking “Promote Culture of Health”? Or “Promote Culture of Care”?

After all, one way leaders can test a guiding principle is to ask themselves: as people in my organization face their work challenges, will this help them know how to do it right, or better?

I don’t think #CultureofHealth helps me do my work better. Instead, it leaves me wondering how on earth I’m going to get help doing my work.

This is not to say, mind you, that I don’t have great respect and appreciation for the work and ideas of the Robert Wood Johnson Foundation. If you’re someone like me, who went to medical school planning to work on improving primary care, you can’t not love RWJF. (Nor can you avoid hoping that they’ll someday find you worthy of funding.)

Furthermore, as someone with a MPH degree, an interest in systems, a background in quality improvement, a focus on person-centered care, and unqualified admiration for Alex Drane’s work highlighting the Unmentionables that affect people’s lives, I absolutely believe in what RWJF is championing.

That is to say: I believe that we as a society must address the social determinants of health, help people feel well, and work within but especially outside of doctors’ offices, to prevent chronic health problems before they develop.

But I worry that #CultureofHealth isn’t quite right, as the guiding principle for certain aspects of health care.

So I’d like to respectfully propose we look for some complements to #CultureofHealth. It’s a great concept, but we likely need more if we are going to find a way to offer all our citizens – including the aged and the chronically ill – the care they need and deserve.

(Are you a data junkie? For data on the scope of multimorbidity and associated utilization in the healthcare system, see the figures in the Medicare Chronic Conditions Chartbook. For data on how many older adults have difficulty walking, doing errands, etc, see Figure 2-14 of the Census Bureau report on seniors.)

ISO a meme for the primary care of the medically complex

We need a meme that speaks to better primary care for people with chronic health problems, and that helps us – as healthcare providers – do our job better. Specifically, we need a phrase that reminds us to be better at:

  • Seeing our patients for who they are, and not focusing excessively on their diseases;
  • Recognizing the many unmentionables – financial problems, caregiving burdens, relationship stressors, depression, substance use – that often underlie people’s difficulty in addressing other health issues;
  • Respecting – and facilitating — the involvement of our patients’ families, peer communities, and other sources of support and influence;
  • Helping our patients try behavioral interventions (such as exercise, stress reduction, social activities, diet changes, therapy, and even “activities that create a sense of purpose”) for the many complaints for which these help, instead of quickly defaulting to pills and procedures;
  • Discussing advance care planning, and addressing people’s fear and anxieties about death and declines in health;
  • Delivering the right care, at the right time, in order to help relieve suffering and optimize management of chronic diseases, so as to help our patients move towards whatever goal is a good fit for their preferences, values, and health situation. 

For those of caring for Medicare patients, we need a meme like this because aging adults – and their families — are coming to us for help, but in most practice situations, we’re having a lot of trouble providing the right help. It’s even, I’m sorry to say, common for us to inadvertently make things worse.

#Cultureofhealth is great for the population at large, and will likely have a profound impact on the health and wellbeing of older Americans in the future.

But let’s also promote some complementary memes, to help inspire the work we’ll be doing helping those with aging, and with multiple chronic health problems. Let’s not just bash the “sick care” system; let’s inspire ourselves to take better care of those who are sick and suffering.

So. I want to end this post by asking for your ideas. What meme resonates with you, when it comes to the clinician’s – or even the innovator’s — work of helping medically complex patients, and their caregivers? What phrases might serve as a touchstone?

By the way, #Cultureofcare was recently used to rally support for family caregivers. I do like it as a guiding principle for our work as doctors, but would love to know what others – clinicians, patients, family caregivers – think.

Recap on Caregiving & Technology at Health 2.0

Last week I attended the Annual Fall Health 2.0 conference in Silicon Valley. It’s a big event and there was lots to see and think about.

Of particular interest to me was a set of pre-sessions titled “Future Technologies for Caregiving” and “Easing the Burden: Connected Caregiving Tools.”

The first session was based on the “Catalyzing Technology to Support Family Caregiving” report which came out this past summer; the report itself was based on an expert roundtable convened in April. That group identified three types of tech solutions as especially interesting to them:

  • An “Intelligent Family Care Assistant” to help with day-to-day caregiving by helping to coordinate the family’s tasks in the context of the family’s other activities.
  • “Wearable technologies”—devices worn on or placed in the body, with sensors and/or human interfaces—to help monitor a person’s health and overall condition.
  • Technologies that provide better connections between family caregivers and health professionals, enabling them to work more effectively as a team in providing care.
(Clinicians, how do these sound to you? Post a comment below!)
The report’s core recommendations included:
  • Create better “concept maps” and find more appropriate language to describe the varied and complex caregiving landscape. 
    • LK’s note: the report doesn’t cite much academic literature, but caregiving scholars have been working on this for a while. Some, like Professor Rhonda Montgomery at the University of Wisconsin, have even developed really nifty practical caregiver assessment tools, like this “Tailored Caregiver Assessment & Referral” tool, which improved outcomes in this preliminary randomized study.)
  • Continue to collect extensive data about the prevalence, burden, and impact of caregiving and the role of technology.
  • Spur a broad national conversation on caregiving.
  • Develop compelling business cases for employers and healthcare providers to support caregiving.
  • Provide caregiving coaching as an integral component of all solutions.
  • Inspire social conversations about caregiving to encourage more learning and support within families and communities.

(All main bullet points above are verbatim from the executive summary of the report.)

In the “Connected Caregiving Tools” follow-up session, four companies demoed their products, and then their executives took questions from the crowd, and from the moderator, RWJF Senior Program Officer Michael Painter.
The four companies were CareSync, CareTicker, Independa, and GrandCare.
Below is a Storify with my tweets related to these sessions, and to a few other Health 2.0 moments related to innovation and caregiving.
What I was most excited about: Kaiser Permanente’s exhibit on Imagining Care Anywhere. Although KP’s website for this model doesn’t seem aging-specific, the exhibit at Health 2.0 centered around — get this — a Medicare patient who is diagnosed with early dementia.

The exhibit modeled a comprehensive family-centered care plan, which included safety sensors in the home. And there was a whole panel on how employers and health providers can support the patient’s wife, a working caregiver. It was really nice, and I hope to see more similar things at Health 2.0 in the future.

[View the story “Caregiving at Health 2.0” on Storify]

Why Doctors Shouldn’t Prescribe Apps, and what we can do instead

 [The following post was first published on The Health Care Blog, where it was titled “Should Docs Prescribe Data?“]

I’ve always been a little skeptical of the push to get doctors to prescribe apps.

To begin with, it would be awfully easy for us to replicate the many problems of medication prescribing. Chief among these is the tendency for doctors to prescribe what’s been marketed to them, rather than what’s actually a good option for the patient, given his or her overall medical situation, preferences, and values.

Then there are the added complexities peculiar to the world of apps, and of using apps.

A medication, once a pharmaceutical company has labored to bring it to market, basically stays the same over time. But an app is an ever-morphing entity, usually updating and changing several times a year. (Unless it stops updating. That’s potentially worse.)

Meanwhile, the mobile devices with which we use apps are *also* constantly evolving, and we’re all basically forced to replace our devices with regularity.

Last but not least, how can we know the benefit of prescribing one app compared to another? Studies are few and far between. And by the time a study is published, everything – the app, people’s use of technology, the mobile devices, the sensors – will have gone through several phases of change. This means we generally won’t have much of an evidence base, when it comes to the prescribing of a given app.

All of this means that it would be a Herculean task for physicians to maintain enough current knowledge about apps, such that they could prescribe them in a thoughtful and informed matter.

So let’s scrap the talk of prescribing apps, and instead focus on what we really can prescribe: what a patient should track.

Why we should prescribe what to track, rather than how to track

Last year, at the Medicine X conference at Stanford, an e-patient and technologist named Natasha Gajewski asked me if I’d participate in a workshop with her. She wanted to include a clinician perspective in a workshop about patient-generated data. Like many proactive patients, she’d found that doctors were not always receptive when she tried to share her health tracking data with them. (For an excellent scholarly commentary on how different healthcare stakeholders view data, read this.)

The workshop was fun: we sat at tables, mixing patients, clinicians, and technologists, and we shared our varied perspectives on patient-generated data.

The patients were, of course, fairly proactive e-patients. They had compelling stories about why they want to track data, how their tracking efforts had helped them, and why they want to share it with their doctors.

As for the clinicians, we talked about what it’s like to get data, especially when you didn’t request it, or when it arrives as reams of information in a difficult format (e.g a long scribbled list of BP readings). We also talked about the difficulty of getting patients to track when we ask them to. After all, the average patient attending MedX is generally more motivated and tech-oriented than the average patient in primary care clinic. Ever asked a patient to keep track of their sleep, or incontinence episodes, or shortness of breath episodes, or even use of their PRN pain medications? It’s often not so easy to get the info you need in order to help them.

Based on our conversation, we came up with the following key points:

  • Gathering patient data between healthcare encounters is very valuable. It doesn’t really matter what the health problem is. Especially if it’s related to symptoms or biometric data (e.g. blood pressure), we’re better off having more data to review. The days of relying on an occasional office-based measurement, or of digging symptom data out of a patient’s memory, should be over.
  • Apps and new technologies have great potential to help patients gather data. This is a no-brainer. We did talk about how it’s important for the data-gathering process to be very user-friendly for the patient; the less effort and friction, the better. We also talked about ensuring that the data-measuring device is accurate and precise.
  • The goal of healthcare encounters is for clinicians to use their medical expertise to help a patient reach his or her health goals. In other words, healthcare – and patient engagement — should be based on the idea of collaboration. In general, patients are experts on their goals (and their symptoms), and clinicians are supposed to be experts in interpreting medical information and recommending management approaches.

Ergo: Clinicians should advise patients on what data to track, to help address a given health problem.

There are number of advantages to this approach. To begin with, it’s good use of a clinician’s medical expertise. If a patient is concerned about sleep problems, we clinicians can advise them as to what sleep — and non-sleep — data will help us help him. If a patient has atrial fibrillation and complains of shortness of breath, we can explain why tracking her pulse would be helpful.

Also, if a clinician gets to weigh in on what kind of data to track, then presumably that clinician will be ready and receptive when a patient does start sending in data.

Best of all, specifying what is medically most useful to track does not require keeping up with ever-changing apps and technology.

In other words, it’s feasible and doable for clinicians.

This doesn’t mean we’re entirely off the tech hook, however. Many patients will want suggestions as to how to track, and the more specific guidance we can provide, the more likely it is that they’ll get the job done.

Also, as clinicians we have a definite stake in how that data gets back to us, and is presented to us. Most of us don’t want to be incessantly pinged regarding an incoming data point. Although the healthcare system should be more continuously attentive to patients, clinicians will need to keep thinking about each patient episodically.

And when it’s time to think about the patient and her data – whether that’s because it’s time for the scheduled follow-up, or because a worrisome data point has generated an alert – we clinicians will want it to be as easy as possible for us to access the data, review it, and do our medical work based upon it.

How you can manage the prescribing of tracking: a cool tool born at MedX

Let’s say we’re good 21st century clinicians and we want to collaborate with our patients and prescribe some tracking. How might we actually manage the logistics?

It turns out there is a very nifty tool now available for beta-testing: Open mHealth’s Linq Platform.

Did I mention that Dr. Ida Sim, a co-founder of Open mHealth and a general internist, was there at that MedX workshop last year?

Fast-forward to this year’s MedX. During a session on improving doctor-patient communication, Ida gave a talk titled “BYO App: Bridging the Gap Between Patients & Clinicians.” She had turned the workshop conversation about patient-generated data into a real working product: a platform that enables doctors to “prescribe” some form of data tracking, and receive that data in a usable format.

True to the spirit of Open mHealth, Linq is meant to integrate data from a variety of apps and devices. The platform itself gives clinicians a way to invite patients to track and share data, while giving patients the flexibility to choose tracking methods that work well for them.

To learn more about Linq, which is now being beta-tested in Stanford’s Preventive Cardiology Clinic, take a look at Ida’s presentation on Slideshare.

Like any new product, it’s surely not perfect. But I think it’s a great direction for us to take, when it comes to doctors using patient-generated data to help people reach their health goals.

Of course, we’ll still need to collectively ensure that patients get the help they need choosing an app or device for a given tracking need. But that doesn’t need to be the doctor’s job. Just as the ideal clinic has a pharmacist available to counsel patients on medications, primary care teams could offer access to app specialists, who would be trained to help patients and families select and set up a tracking system.

And then we doctors would be freer to focus on what’s most important: applying our medical expertise and our human presence, in the service of helping patients reach their health goals.

Advance Care Planning Online: GeriTech takes a look at MyDirectives.com

A few weeks ago, a visitor to Geriatrics For Caregivers sent me a message via the contact form.

He explained that he is a hospital chaplain and that his workplace is considering using MyDirectives.com to help their patients with advance care planning.

“I would love to hear your opinion of the service,” he wrote.

I’d actually never heard of this service, but that’s not so surprising…new healthcare services for consumers emerge and evolve so quickly that even if I followed tech for aging adults full-time, I’d have difficulty keeping up.But I have a soft spot for advance care planning. So I decided to take a look at this website, in order to let the chaplain know what I thought.

And, as an experiment, I also decided to try recording myself visiting this advance care planning site.

So if you are wondering what I thought, or if you’d like to see what a practicing doc might do when a patient asks about some new-fangled web-based service, you can watch me explore MyDirectives below. (For audio-only, click here.) [Read more…] about Advance Care Planning Online: GeriTech takes a look at MyDirectives.com