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In Search of Technology that Improves Geriatric Care

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What Academics Can Learn From Medicine X

[This post was first published on The Health Care Blog on 10/25/13.]

A few weeks ago, I went for the first time to Stanford’s Medicine X conference. It’s billed as a conference that brings a “broad, academic approach to understanding emerging technologies with the potential to improve health and advance the practice of medicine.”

Well, I went, I saw, and I even briefly presented (in a workshop on using patient-generated data).

And I am now writing to tell you about the most important innovations that I learned about at Medicine X (MedX).

They were not the new digital health technologies, even though we heard about many interesting new tools, systems, and apps at the conference, and I do believe that leveraging technology will result in remarkable changes in healthcare.

Nor were they related to social media, ehealth, or telehealth, even though all of these are rapidly growing and evolving, and will surely play important roles in the healthcare landscape of the future.

No. The most remarkable innovations at MedX related to the conference itself, which was unlike any other academic conference I’ve been to. Specifically, the most important innovations were:

  • Patients present to tell their stories, both on stage and in more casual conversational settings such as meals.
  • Patient participation in brainstorming healthcare solutions and in presenting new technologies. MedX also has an ePatient Advisors group to help with the overall conference planning.

These innovations, along with frequent use of storytelling techniques, video, and music, packed a powerful punch. It all kept me feeling engaged and inspired during the event, and left me wishing that more academic conferences were like this.

These innovations point the way to much better academic conferences. Here’s why:

The power of patient presence

I wasn’t surprised to see lots of patients at Medicine X, because I knew that the conference has an e-patient scholars program, and that many patients would be presenting. I also knew that the director of MedX, Dr. Larry Chu, is a member of the Society of Participatory Medicine. (Disclosure: I’ve been a member of SPM since last December.)

I was, on the other hand, surprised by how powerful it was to have patients on stage telling their stories.

How could it make such a difference? I am, after all, a practicing physician who spends a lot of time thinking about the healthcare experience of older adults and their caregivers.

But it did make a difference. I found myself feeling more empathetic, and focused on the patient and family perspective. And I felt more inspired to do better as a physician and as a healthcare problem-solver.

In short, having patients tell their stories helped me engage with the conference presentations in a more attentive and meaningful way.

Now, some will surely be tempted to wave this off as a gauzy touchy-feely experience that is peculiar to the fruit-cakes of the Bay Area; a nice conference touch that isn’t materially important to the purpose of an academic conference.

Academics come to conferences, after all, to tell each other about interesting and important developments in their field, so that they can return to their usual environment and do better work. Most experts probably think they already know enough about what happens to patients, or they think it’s more important to hear from other experts than from the patients.

But it turns out there is some psychology research to back up my own experience: studies have found that concrete examples help ideas and concepts stick. They can also help people solve certain problems faster. For instance, according to “Made to Stick,” most people find it easier to make a list of white objects found in the refrigerator than of white objects overall. Even though the universe of white objects is bigger than that of white objects found in fridges, our minds do much better when a fridge is specified because having a concrete item to anchor our thinking allows us to generate the white objects much faster.

There’s also the issue of “empathy for the end-user,” which is a core tenet of the design thinking approach to solving problems. In healthcare, the end-users are the patients (and also the front-line clinicians) who are supposed to eventually benefit from all the research and hard work of the academics.

Imagine if all academics left conferences feeling greater empathy for the end-users of their brainy thinking, and with concrete examples to help them focus their academic efforts.

Would we end up doing better work serving society? I think we would.

The power of patient participation

It’s one thing to invite patients to tell their stories, and to actually listen when they speak.

It’s another altogether to welcome them as active participants in solving healthcare problems, and in this arena the MedX conference sets an important example that all academic conferences should consider copying ASAP.

At MedX, patients presented new technologies and solutions that they’d helped create. (Needless to say, these are often more patient- and person-centered than what we doctors and academics might come up with on our own.)

Patients exchanged thoughts and ideas with healthcare professionals in panel conversations held on the main stage. In the workshop I helped present on patient-generated data, small groups consisting of patients, clinicians, and technologists brainstormed ways to better incorporate patient-generated data into clinical care. (The group I was facilitating came up with some ideas I’d never thought of; seven heads with complementary perspectives are better than one.)

In fact, the entire first day of MedX was titled the “Patient neXt Symposium,” and patients comprised one of MedX’s three advisory boards (the others being a scientific advisors board and a “thought leaders” advisory board).

In other words, MedX’s approach takes to heart the phrase “Let Patients Help,” which is the title of e-Patient Dave’s recently published book on how patients can and should meaningfully participate not only in their own healthcare, but in improving the healthcare system. (See this TED video here for Dave’s take on patients being the most under-used resource in healthcare.)

Now, it’s true that most patients at MedX would probably describe themselves, and be described, as “e-patients,” a term that just last week drew a perplexed look from at least three of my colleagues in academia to whom I was describing my MedX experience.

And there is some truth to the common objection that I hear: “But those e-patients aren’t like most patients. They’re more motivated, more medically sophisticated, and often of higher socio-economic status.”

True. And still, even though these e-patients may not be entirely representative of all patients that we serve in healthcare, it still seems clear to me that we are much better off having e-patients at conferences rather than no patients at all.

After all, if our systems and solutions don’t even work for the patients with extra energy and motivation, how will they be manageable for those with fewer advantages?


More on MedX

A few other notable features of MedX:

Compelling multi-media presentations. Very few dry bulleted PowerPoint slides here! At MedX, storytelling seems to be encouraged and guess what, it’s quite an effective way to make an impression, especially when combined with well-made short videos and music.

In reality, I think it would be a stretch for most academics to learn multimedia techniques and attempt to present their points at conferences in a more compelling fashion. However, it’s instructive (and inspiring) to see these techniques in action, as we should certainly learn to use better approaches when it comes to sharing our ideas with the public, or otherwise influencing an audience outside our expert peers.

For those who want to see what MedX presentations were like, you can find videos on their YouTube channel here.

Walk and talks. I’d never seen this at a conference but it struck me as a brilliant twist on the usual stand-and-network routine. After all, walking is healthier, and can even clear the mind and lead to more creative conversations.

Social media extension of the conference. Not only were conference attendees tweeting away (myself included), but many other people followed the conference via Twitter (#medx) and were even invited to submit questions for panelists via Twitter.

Warm, friendly, inspiring atmosphere. I feel almost a little silly mentioning this, but it did feel notable to me! I think some of this is the tone that Larry Chu sets, and some of it is that it’s a relatively small gathering with many people who are glad to see each other or meet each other. Artist and patient advocate Regina Holliday not only painted up a storm, but led a group in singing a song about caregiving. Need I say more.

But missing at MedX: Not many older patients with mundane chronic illnesses, i.e. the kind of Medicare patient with multimorbidity that I often write about. Hope to see some arrive at future conferences. For now, less common diseases and cancer are especially well-represented among the e-patients at MedX. (One e-patient present is allergic to his own semen; now there is an unusual condition although spending months with non-specific symptoms while being blown off by doctors is unfortunately not so unusual.)

Summing it up

Stanford’s Medicine X describes itself as “a catalyst for new ideas about the future of medicine and emerging technologies.”

It is this, but mainly it struck me as a catalyst for new ideas about what an academic medical conference can and should be, especially in these days of new technologies and shifts in the culture of medicine.

In particular, the Medicine X conference demonstrates how the presence and participation of patients makes a medical conference much much better, mainly by adding a much needed dose of inspiration and reality-grounding, as well as crucial perspectives to help us learn and problem-solve.

It is far too easy, as healthcare professionals, for us to get wrapped up in our own expertise and in talking to other experts. Healthcare is ultimately supposed to make the health and wellbeing of regular people better, and in clinical care, we do this best when we establish effective collaborations that enable us to help people with their health concerns.

Patient participation at academic conferences shouldn’t be a luxury, a curiosity, or a special feature unique to Medicine X. It shouldn’t be optional to learn from patients and get their help in solving healthcare problems.

Larry Chu has said he’d love for people to copy his conference ideas. I hope other medical conference organizers do so soon. They might start by studying the MedX conference schedule and the videos on YouTube.

Individualized medical decision-making: still harder than it should be

Shouldn’t everyone get an individualized assessment of likely benefits, burdens, and risks before making a big medical decision? 
I was asked this question recently, during an interview for an Internet radio show on aging, called “Reaching for the Gold.”
Per my host’s request, I’d been explaining the practice of geriatrics, and talking about the geriatric approach to addressing the medical needs of older adults. Since I’d mentioned that aging often brings on greater risk of side-effects or complications from anesthesia, the host, Harriet Tramer, asked me whether older adults should be trying to avoid surgeries. I responded by trying to explain the idea of balancing likely benefits versus burdens and risks, before making a decision about surgery. Some surgeries seem more likely to lead to substantial benefits than others. Some situations seem riskier, or more burdensome, than others. Hence, an individualized approach is best.
Which led Ms. Tramer to ask me the question above: shouldn’t everyone — not just the elderly, or those seeing geriatricians — get this type of individualized counseling before deciding to pursue an operation, or making another type of big medical decision?
Well…yes! Patients of any age can benefit from this type of individualized counseling, which is sometimes referred to as shared-decision making. It enables patients to make more informed decisions. It can also help patients obtain care that is a better fit for their values and preferences. And in some case, it might improve outcomes, if patient and clinician decide to forgo a risky procedure. Last but not least, individualized assessments of likely benefits and risks could improve the value of healthcare (value = benefit/cost), if such assessments result in patients forgoing expensive procedures that are unlikely to be helpful.

This type of individualized care is good for everyone, but is especially beneficial as people get older. Since older adults tend to have more chronic conditions and disabilities, there is more to consider when trying to identify benefits, risks, and burdens of a given course of action.

But there is a downside to engaging in this kind of collaborative and individualized medical decision-making: it requires time, energy, and effort. And for clinicians, not only does it take time and energy to have the conversation with patients and families, but it also usually takes time and energy to figure out just what are the risks, benefits, and burdens when a specific patient faces a specific medical decision.

Could technology make this process of estimating risks, benefits, and burdens easier for clinicians and patients?

The challenges of individualized medical decision-making

Several years ago, one of my elderly primary care patients developed memory problems. He had been pretty hale and sharp, in relatively good health. But then he started to complain of difficulty remembering things and organizing himself, and after a thorough evaluation, we diagnosed him with Alzheimer’s disease.

Before he became too impaired, we talked about his preferences for healthcare in the future. He voiced a preference for not spending too much time in the hospital, and he wanted to avoid surgeries and procedures unless they were likely to really improve his quality of life. And of course, he didn’t want to be kept on life support if he were terminally ill.

About a year later, he’d progressed to moderate dementia, and his medical decision-making had been taken over by a professional conservator. He developed a bad cold, and the urgent care doctor did an xray to evaluate for pneumonia. On xray, he didn’t have pneumonia. He did, however, seem to have a lump in his lung, and a follow-up CT scan confirmed a small-medium lung mass, suspicious for cancer.

And now what to do? The usual next step would be to have the lung doctors biopsy the mass. Small localized lung cancers in particular can often be treated with surgical removal (unless the biopsy shows that it’s one of those cancers that is unlikely to be successfully treated with surgery.) But this patient was elderly, and had dementia. Which meant that surgery would be more burdensome to experience, and came with higher risks of complications during and immediately after the surgery.

The conservator and I weren’t sure what to do. When patients are making decisions for themselves they often just make a gut decision (undoubtedly influenced by the doctors around them) and don’t always want statistics and details. But I wanted to make sure we’d considered the decision properly, and the conservator certainly wanted to be sure of doing right by the patient.

We needed data:

  • How likely was it that the mass was likely to make him feel symptomatically sick and/or shorten his life, if left untreated?
    • The oncologists refused to answer this question, saying they absolutely needed a biopsy sample before they’d hazard a guess.
  • How likely was the patient to find the biopsy procedure uncomfortable? What was the risk of complications? (And how do we factor in the risk of things like getting delirium or distressed by the procedure, and subsequently falling at home?)
  • If he had the biopsy and it turned out to be the type of cancer that was likely to be cured by surgery, what would be the risks/benefits/burdens of the surgery, and would the conservator consider them acceptable?
  • What was the patients overall prognosis and life expectancy, even before taking into account the new lung mass?
As you can see, a tailored assessment of risks, benefits, and burdens became very complicated, very quickly.
We never did get the exact statistics, although I did spend a fair amount of time looking things up in my medical references, and talking to my specialty colleagues. 
In the end, we decided to not get a biopsy, and instead repeat the scan in several months to see if the mass was growing. Not because we’d biopsy him at that point, but because we decided it would be useful for us to know if the patient was suffering from an advancing lung cancer. We also, of course, made plans to follow the patient’s weight, appetite, and function.
What would’ve been the alternative to this process? Here are some other ways the situation can play out:
  • Physician decides the patient should next have a biopsy. Patient and conservator go along with what the physicians recommend. 
  • Physician decides the patient is elderly and has dementia and so should not have further complicated medical care. Patient and conservator go along with physician’s recommendation.
  • Physician tells conservator: the decision is up to you, and tries to avoid influencing the conservator’s decision. The conservator may or may not try to look things up on the Internet, or otherwise get more information. Most proxies, in my experience, do not ask the physician “which choice do you think is likely to give this person the best quality of life over the next five years,” but I wish they would.


Facilitating individualized medical decision-making for everyone

Individualized decision-making is important. If we want more patients to be able to access it, we’ll need to develop better tools and resources.

To date, the main resources available are decision aids, many of which have been carefully developed by non-profit experts and are of high-quality. When a good decision-aid can be located and used, patients and clinicians generally benefit.

The trouble is that decision-aids are often not available for the decision at hand. To begin with, a good decision aid can be hard to find online; many are only made available as an institutional subscription, so individual patients and small clinical practices may not be able to access them.

Another problem is that decision-aids are usually created for a certain common condition or decision, and are tailored to help an “average” patient. Unfortunately, I know of no pre-made decision aid meant to help elderly patients with dementia consider their options for diagnosis and management of a suspicious lung nodule. Dementia and advanced age are complex factors because they both introduce a lot of variability into the factors of risk, benefit, burdens, and preferences.

Still, although I don’t expect there will ever be a pre-fabricated decision aid available to help with the situation I described, I do think that the right tools could go a long way in helping clinicians and patients and families make decisions for frail elders. For example, we might eventually have easier access to calculators (perhaps relying on information gleaned from big data) that can capture the patient’s physiologic data and present us with better information on prognosis and risk during procedures. (I like ePrognosis, but it doesn’t yet feel like something I can use in clinical practice.)

Technology, data, and a new culture of shared decision-making hold such promise. Within the next, say, ten years, will we see it turn into real improvements for the real sticky situations affecting elders and their families? Will it soon be easier for all clinicians to provide better help, to all patients?

How to Help Families Assess Quality of Care

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

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

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

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

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

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

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

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

Why seek a second opinion

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

Barriers to second opinions and how to overcome them

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

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

Summing it up

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

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

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

Designing for Caregivers of Elders

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

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

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

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

Medicine in Denial: What Larry Weed Can Teach Us About Patient Empowerment

[This post, which was first published on The Health Care Blog on 5/22/13, is the third and final part of a commentary on “Medicine in Denial,”(2011) by Dr. Lawrence Weed and Lincoln Weed. You can read Part 1 here and Part 2 here.]

It seems that Dr. Larry Weed is commonly referred to as the father of the SOAP note and of the problem list.

Having read his book, I’d say he should also be known as the father of orderly patient-centered care, and I’d encourage all those interested in patient empowerment and personalized care to learn more about his ideas. (Digital health enthusiasts, this means you too.)

Skeptical of this paternity claim? Consider this:

“The patient must have a copy of his own record. He must be involved with organizing and recording the variables so that the course of his own data on disease and treatment will slowly reveal to him what the best care for him should be.”

“Our job is to give the patient the tools and responsibility to organize the knowledge and slowly learn to integrate it. This can be done with modern guidance tools.”

These quotes of Dr. Weed’s were published in 1975, in a book titled “Your Health Care and How to Manage It.” The introduction to this older book is conveniently included as an appendix within “Medicine in Denial.” I highlighted it this section intensely, astounded at how forward-thinking and pragmatically patient-centered Dr. Weed’s ideas were back in 1975.

Thirty-eight years ago, Dr. Weed was encouraging patients to self-track and to participate in identifying the best course of medical management for themselves. Plus he thought they should have access to their records.

Fast forward to today. The Weeds’ book, appendix aside, contains many of the best ideas I’ve encountered regarding empowering patients and engaging patients.

This is because in the Weeds’ ideal world, healthcare would provide an orderly, consistent, dependable, and transparent infrastructure through which patients would move through as required by their medical needs, their preferences, and their goals.

The Weeds compare this vision of healthcare system to our existing transportation system. It’s an interesting analogy. They point out that travelers rely on expert service providers (i.e. pilots, travel agents, mechanics) as needed, but that the primary decision makers are travelers themselves, who are able to choose the destination, the route, and the mode of travel for a journey.

The Weeds use their transportation analogy to make a strong case for individualizing medical care according to patient preferences. They point out that two people driving across the country might choose completely different routes, depending on their preferences and needs, and that no one would expect travelers to conform to an “evidence-based” best route determined by experts.

They observe that similarly, no one should expect that two different people labeled with the “same” disease have comparable medical needs. They correctly note that “effectiveness is context-specific,” and that the patient really should be the one best positioned to determine effectiveness.

Hence the Weeds describe high quality, efficient care as emerging “case-by-case, each person finding a different pathway in a progression of many small steps, with each step carefully chosen, reliably executed, and accurately documented.” They also critique evidence-based medicine, which they feel interferes with the process of thoughtfully tailoring care to fit a patient’s uniqueness.

They propose that health care not be an “esoteric domain for specialized experts” but rather be seen as a “universal human pursuit.” They state that the health care system should be usable by ordinary consumers when feasible.

This is a very robust and well-articulated vision of healthcare that serves the needs and well-being of patients, rather than of providers. I especially liked the emphasis on patients learning to take an active part in individualizing the medical care so that it can best meet their needs, and would say this approach is essential if primary care doctors are to serve the role of expert consultants helping patients meet their health goals.

In fact, an entire chapter of “Medicine in Denial” is devoted to the need to develop a system of educating patients and helping them gain the skills to be more autonomous in healthcare. Particular good in this chapter is the Weeds’ explanation of why patient involvement is essential in two common medical situations: cases of medical uncertainty, and cases of chronic disease.

“In situations of uncertainty, the patient faces a set of choices, with substantial evidence for and against each choice based on the details specific to his or her own case. The physician cannot be relied upon to identify the individually relevant options and evidence without the right informational infrastructure. Once that infrastructure is available, reliance on the physician radically diminishes. The patient’s private judgment should control, as trade-offs are recognized, ambiguities assessed, and choices made. The choices are inherently personal.”

“[Chronic disease] cases start with great uncertainty, but often what needs to be done becomes reasonably clear from careful investigation and planning. Then the issue is execution, feedback and adjustment…It is the patient, not the physician, who must live with the risks, the pain, the trade-offs, the effort and time that decisions may entail…The patient is the one who must summon the resolve to make the behavior changes that so often are involved in coping with chronic disease. If the patient does not feel responsible for deciding what has to be done and is not heavily involved in developing the informational basis of that decision, then very often the result is “noncompliance” with doctors’ decisions.”

Given that in geriatrics, we are constantly trying to help patients navigate medical uncertainty as well as chronic disease, the above paragraphs really resonated with me.

Psst! Pass it on: patient empowerment is the underlying driver of “Medicine in Denial”

It’s this extremely patient-centered and person-centered vision of what healthcare should be that underpins the Weeds’ multiple detailed critiques of healthcare as we practice it now, and their proposals for how healthcare should be changed.

But it seems that “Medicine in Denial” has generally not been perceived as a book about transforming healthcare to support participatory medicine. For instance, Dr. Weed is not mentioned by name in e-Patient Dave’s recently published book “Let Patients Help,” nor is he mentioned in Eric Topol’s “Creative Destruction of Medicine,” two recently published books that emphasize the need for healthcare to provide more information and autonomy to patients.

This is too bad. Many people are currently in support of changing healthcare to better meet patients’ needs. But few have been as thorough, articulate, and perceptive about the obstacles to such changes. I’d also say that only a minority of writers seem to understand, as the Weeds do, the real challenges of managing multiple chronic illnesses over years.

Today we have a growing e-patient movement pushing for substantial changes in the patient-provider power dynamic. We also have the Internet making information widely available, as well as digital health technologies that can finally offer patients unprecedented assistance in accessing and organizing their own health data. Larry Weed was surely ahead of his time in 1975, but what about now?

Well, now it seems that Larry Weed is mainly thought of as someone who criticizes the way physicians approach diagnosis, or wants to reform the way they maintain medical information, or proclaims that all of medicine is in denial. This, I think, is in large part due to “Medicine in Denial” itself (starting with its title).

It’s a good book, but it is long, and feels somewhat sprawling. Who exactly is the intended audience? I found it a bit unclear. And what are the authors asking of the reader, other than to understand their analysis and agree that the profession of medicine is, in fact, in denial? The Weeds do describe how they believe medicine should be practiced, but the book lacks specific suggestions on how we might get there from here.

I found myself wishing the Weeds had worked more closely with an editor and – don’t laugh – some kind of a marketing or strategy consultant.

Because I think there is a market for their ideas, and that market is essentially the patients themselves, along with the patient engagement movement. It would be patients, after all, who have the most to gain from medicine adopting a more orderly and transparent approach to diagnosis and documentation. Likewise, it is the patients who have the greatest interest in chronic medical care being tailored to their individual needs, rather than proceeding according to evidence-based guidelines which may or may not be well-suited to their medical uniqueness.

So I found myself wishing that the Weeds would’ve addressed their book more directly to patients, and to those who are rooting for “disruptive innovation” in healthcare and hoping it will usher in a shiny new future of patient empowerment.

Summarizing my impressions of Medicine in Denial

My takeaway in assessing the contents of Medicine in Denial was this:

  • The Weeds’ vision of what healthcare should be is very sound, compelling, and in line with what many people – patients and healthcare experts – say healthcare should become. This book can and should be considered a manifesto for participatory medicine, especially since the Weeds do a particularly good job of emphasizing how we can individualize care according to the goals and preferences of patients.
  • The Weeds’ analysis of how the common practices of physicians – both in terms of cognitive work and of documentation — interfere with ideal healthcare is robust, detailed, and compelling. The flaws they identify in current practice are undeniably present and adversely affecting care. This should not really be a subject for debate (although it probably will be). The debate should be about what we can and should do to address these problems.
  • The Weeds’ proposals for alternative methods of delivering healthcare are intriguing, and deserve serious consideration. In this commentary I’ve touched on their proposals for how patients should be initially assessed (via standardized inputs and knowledge couplers, followed by clinical judgment and patient-provider collaboration), and how medical charting should be reformed to support comprehensive individualized care over time. Can these proposals really be implemented and operationalized at scale? I’m not sure, we would have to pilot the approaches, or better understand what happened in those smaller practices that Dr. Weed says adopted his methods several years ago.

In short, I believe Larry Weed and his son Lincoln are completely right about what healthcare should offer to patients, and what’s wrong with the way doctors practice now. Their analysis of what’s wrong touches on issues related to quality, outcomes, patient-centeredness, patient empowerment, medical education, the training of the healthcare workforce, and the personalization of medicine.

What to do about all that’s wrong about healthcare? These are the difficult questions that we are all wrestling with. I don’t know that implementing all of the Weeds’ ideas is the way to go, but I’d like to see their ideas being given more serious consideration.

“The religion of medicine is not feats of intellect. The religion of medicine is helping to solve the problems of patients, and the compassion involved in the very act of care.”

Words to change medicine by.