GeriTech

In Search of Technology that Improves Geriatric Care

geriatrics

4 common senior health problems that need solving

I noticed a few weeks ago that Brian Quinn over at RJWF Pioneer was asking for problems for the holidays. Apparently he is frequently approached by people with solutions, not with problems.

I wish he and I could switch places for a few weeks. You want problems? I’ve got problems, going up the wazoo (not my own, fortunately) and out the ears (which I do look in; lots of older people hear better once that wax is removed).

For instance, in my last post I mentioned some very common problems that I’ve discovered among most of my patients, even among my wealthy white educated Medicare patients.

In this post I’ll clarify these problems a little bit more, and share some thoughts on some approaches that I can envision helping solve each problem. (Hint: I can see a future for tech solutions here.)

Disclaimer: These are big complicated problems. I briefly list a few reasons why they happen, but this obviously can’t be comprehensive. (There’s a reason why expert workgroups produce such long reports.)

Real problems of real elders (whether wealthy or not)

  • Prescription of medications that cause confusion and worsened balance in seniors (and may increase the risk of developing dementia: see here and here). 
    • Why it happens:
      • Many common prescribed (and OTC) medications are “psychoactive”. These are the ones that usually come with warnings to not drive or operate machinery.
      • Most doctors know, when asked, which medications have these side-effects, but they underestimate how likely it is that an older patient will be affected.
    • What could help:
      • An app or other service that helps patients and caregivers quickly figure out whether a prescribed medication is on the Beers Criteria. This is a list of 34 medications and types of medications that are “potentially inappropriate” for older people, and was last updated in 2012.
      • A Beers Criteria App exists for healthcare providers, but I haven’t found one yet for patients and families.
      • The app should provide guidance on how to constructively engage providers when an potentially inappropriate medication is prescribed. The American Geriatrics Society offers suggestions here.
      • Most important is that the app make it super easy for patients to enter the medication name into the app. Has anyone yet developed a way that patients can take a picture of the prescription bottle, or barcode, or QRS code? (I’m so tired of medication apps that require people to laboriously type in medication names — huge usability killer.)
  • Dementia that goes undiagnosed for far too long; once diagnosed, inadequate education and support for family caregivers
    • Why it happens:
      • PCPs are too busy; they have too much to do, and far too little time.
      • Many PCPs are uncomfortable doing cognitive screening, both because they haven’t done it often and because they aren’t sure exactly what to do with the results (nobody likes to open a can of worms).
    • What could help getting diagnosis started:
      •  Cognitive screening is now supposed to be part of Medicare’s annual wellness visit. A suitable app could help patients and caregivers be proactive in gathering practical information prior to the visit. This should include a questionnaire on ability to manage IADLs independently; problems with IADLs are a good sign that further cognitive evaluation is needed. One could also include a short questionnaire based on something like the Alzheimer’s Association’s 10 signs.
      • I currently find no app available to help patients and families prepare to bring up a concern of cognitive impairment to a clinician. Does anyone know of one?
  • Lack of care coordination among multiple specialists and care sites
    • Why it happens:
      • Many reasons, including siloed information, not-yet-widely-compatible HIT systems, clinicians unused to having to coordinate with others and share information.
      • Those patients and families who are willing to keep their information and move it with them have found it hard to obtain and organize their information. (I’m eager to see if the new Blue Button output will help.)
    • What could help:
      • This problem’s too big to address in this post. Eventually we’ll have better personal health records and health information exchange.
  • Inadequate understanding of overall health status, health trajectory, and prognosis
    • Why it happens:
      • Many reasons; generally clinicians are lacking the time, comfort, and sometimes experience in addressing the “big-picture” with patients and families, especially if that big picture isn’t looking so rosy.
    • What could help:
      • Clinicians need a lot of training and support in order to do their part. Apps and programs are sorely needed to help calculate life expectancy, likelihood of dying in next few years, etc. Right now it takes a lot of work to get the right data right now; imagine if clinicians could instead ask Siri (or IBM’s Watson). Then they could focus on the task of sharing the info with the patient (this is hard, and before especially tough talks I still review something like the Fast Facts for Palliative Care, or Uptodate).
      • While we wait for millions of clinicians to get more training: it would help if patients and families could be coached in how to ask their providers to address big-picture issues, by regularly saying things like “How do you expect my overall health and function to evolve over the next five years?” Or “How important is managing this condition, in the overall context of my loved one’s health?” (This is when we can opt to not do routine cardiac testing in the dementia patient who is peeing blood and losing weight — true story from several years ago! We really need to help both clinicians and families see the forest before addressing the trees.)
      • Coaching and patient education interventions have been developed and tested; the issue is making them more widely available and usable for patients and families.

Ok, I will list ideas for addressing the second half of my list in my next post.

In the meantime, if any clinicians or others have ideas on how to address the above problems, please comment or email me.

In a nutshell

Even wealthy educated older adults repeatedly suffer from certain pervasive problems in outpatient healthcare. These include the prescribing of risky medications, late diagnosis of cognitive impairment, lack of care coordination, and inadequate understanding of overall health status and prognosis.

In this post, I briefly summarize some key causes for these problems and some ideas for addressing them.

I’d love to be pointed towards any practical tools or technologies that can help clinicians, patients, and families address these issues. 

TEDMED’s Chronic Diseases Videochat: Lots of Lifestyle, Minimum on Multimorbidity

Yesterday was the TEDMED Great Challenges virtual panel discussion on “Managing Chronic Diseases Better“. I listened and participated by Twitter. (See it here.)

I came out of the talk thinking they should rename their Great Challenge:

How Coaching and Lifestyle Modification Can Prevent Diabetes, Obesity, and Cancer, and Can Also Help Manage Diabetes. 

Because those were the main topics discussed, and also seemed to be the primary domain expertise of the Challenge Team.

Now, these are indeed worthy topics of great population health importance.

However, such a focus marginalizes the millions of Americans who need much more than coaching and lifestyle modification to manage their chronic diseases. It also offers little help to those of us — clinicians and caregivers — in the trenches who are struggling to help these patients with their complex health needs.

Another disappointment is that the discussion didn’t really address the challenges of managing multiple chronic diseases, also known as”multimorbidity”. This is unfortunate, since managing chronic diseases becomes a different — and harder — ball game when people have several of them. (Here’s one review of the evidence.)

This is especially true when people are older and frailer, or if they have cognitive impairment (which seriously impairs their ability to self-manage their chronic conditions).

And as any primary care provider can tell you, there are *lots* of people out there with multiple chronic diseases. The UpToDate chapter on multimorbidity (which relies in part on this report) lists the following fun facts:

  • Estimated 1 in 4 Americans have at least two chronic conditions
  • Estimated 2 in 3 Medicare beneficiaries aged 65+ have two or more chronic conditions, 
  • Estimated 1 in 3 Medicare patients has 4+ chronic conditions 

The UpToDate authors go on to say that:

“Multimorbidity is associated with staggering healthcare utilization and costs. The two-thirds of Medicare beneficiaries with multimorbidity account for 96 percent of Medicare expenditures.”

Doesn’t this sound like a Great Challenge to you?

Well, it seems this is not the Great Challenge TEDMED has in mind. This Great Challenges team was very strong on prevention and lifestyle modification, had a strong patient advocate (a younger woman with Type I DM), but had precious little advice on managing scenarios like the one I describe in this post.

What to do when a person with diabetes, high blood pressure, arthritis, glaucoma, and eleven
medications comes to the visit, where we discover uncontrolled blood sugar, too
high blood pressure, falls, urinary frequency, anxiety, trouble managing
medications, and social isolation?

This is managing chronic diseases as many of us experience it. We could use more innovative brainstorming sessions to work on solutions.

The TEDMED panel on the question I didn’t ask

Here is a question that was mistakenly attributed to me — in a twist of cosmic irony, TEDMED identified me as the author of a question that I would literally *never* ask —  followed by the initial answer provided by Dr. Micheal Roizen, Cleveland Clinic’s Chief Wellness Officer:

Q: “What do I do with patients who are resistant to any kind of help with their chronic illnesses, and with behavior change related to that? How do we convince patients who are resistant to treating his or her chronic disease?”

A: “The only ways are either educating them about what is important, or incentivizing them strongly.” (See the rest of the answer here; the details include coaching, environment modification — get the Chips Ahoy out of the room — and a nice $2000 bonus for those patients who succeed).

Dr. Roizen goes on to say that 63% of their patients with chronic disease have transformed. This is a nice result. But I doubt you’d make much headway using that approach with older patients suffering from multimorbidity.

Why? Let me start by answering the question that I didn’t ask.

What, in fact, do clinicians like me do when we come across older patients who are “resistant to help with their chronic illnesses”? Here’s what I do:

  1. Assess for cognitive impairment. Before I start “educating”, I look into underlying reasons for why the person can’t manage their health care, or otherwise isn’t following through on the care plan. In older adults, cognitive impairment is often discovered, once one looks. (Early dementia and medication side-effects are the most common underlying problems that I find in the outpatient setting.)
  1. Try to figure out how the patient and family see the illnesses, in order to understand what’s interfering with their ability to address the illnesses. Common things that turn up include:
    1. Financial problems getting the medications
    2. Overwhelmed by too many medications, by too much complex medical care in general, or by caregiving demands
    3. Skepticism about allopathic medicine or other doubts about our conventional proposed approach
    4. Misunderstanding how serious the illness is, or how treatable it might be
    5. Substance (ab)use
    6. Low health literacy

You’ll notice that many of the problems above are far more common in people with multiple chronic illnesses.

Now, I’m not against lifestyle changes and behavior modification. My goal, and I know this is the goal of many PCPs and geriatricians, is to figure out a mutually agreeable, and feasible, plan to help the patient with his or her health. Often this includes coaching on lifestyle (if I can help them get it) or environmental modification (if feasible). 

But a lot of it is figuring how to help patients follow-through on conventional medical management. Like picking one or two generic medications to focus on (a good opportunity to talk about what’s likely to bring the patient the most bang for their buck). Or picking a symptom to focus on managing. Or sitting together to review what the specialist said, and putting it in light of the patient’s overall health condition (and other chronic diseases).

The TEDMED panel on geriatrics and chronic disease

Another illuminating question and answer: here is the geriatrics-related question I had submitted via Twitter:

My Q: “So much chronic disease occurs in geriatric patients. Why aren’t there more resources targeted especially towards the elderly, or those with dementia?”

The question was directed to Dr. Dileep Bal, a public health officer from Hawaii, and you can view Dr. Bal’s answering the question here.

He gives a long detailed answer focusing on — surprise surprise — prevention and wellness. He says the “focus needs to be in keeping them well, especially for elderly
population. Fifty percent of our health costs are related to people in
their last year of life. So I think both from a financial, and from a
lifestyle point of view, specially for the elderly, you need to focus on
how do you keep them healthy.”

He also says “Keep the well elderly well at home, before they show up in my clinic.” He goes on to describe a program of preventive care including senior centers, exercise programs, and systemic dietary interventions (like limiting soda and fast food availability). He mentions people in their 90s participating in exercise programs, and the need to modify societal cues (McDonalds is mentioned).

Another physician on the panel, Dr. Deneen Vojta (whose bio highlights extensive experience in diabetes prevention and management) offered a different perspective. She noted that older women commonly do not list exercise and healthy eating as priorities, but rather care about their finances, friends and family, and staying in their home.

True that! Then Dr. Vojta goes on to describe how lifestyle changes should be framed as ways to achieve those above priorities. She doesn’t address how patients suffering from very symptomatic chronic conditions, such as heart failure and COPD, can be supported in making these lifestyle changes (hint: for many, it requires medication optimization so they can be more active).

Sickcare versus health education and coaching

One part of the talk that did resonate with me was when Amy Tenderich pointed out that as our healthcare system is really a “sickcare” system, it’s problematic to ask it to be responsible for prevention. She suggested that we might consider adding another arm to the system, which would focus on health education and coaching.

I like this idea. However, for those patients who are older and sicker, education and coaching needs to really integrate into their “sickcare,” both by helping patients navigate the sickcare system, and by taking their various diseases into account when providing health education and coaching.

For instance, I’ve seen many older diabetic patients develop mild dementia, and struggle with their diabetes care. They need help figuring out simpler and safer strategies for their diabetes. However, many diabetes educators don’t seem prepared to problem-solve around mild dementia. (Or perhaps they just don’t notice my writing “suspect mild dementia” in the referral? Would earlier definite diagnosis via brain scan help?)

Is TEDMED’s panel missing a key point of view?

I found myself wishing TEDMED had included an expert able to really discuss managing multiple chronic diseases in primary care, such as Ed Wagner, who pioneered the Chronic Care Model. (This commentary by Wagner on chronic care management addresses multimorbidity and person-centered care, and is a really fantastic read for those who have journal access.)

They could’ve also considered someone particularly focused on the unique needs of older adults. I might nominate someone like Cynthia Boyd, a geriatrician who has published fantastic articles on multimorbidity and on Guided Care, a program
that help older adults manage and coordinate the care of their many chronic conditions. (Her 2005 JAMA article on what happens when you try to apply clinical practice guidelines to a typical patient with multiple conditions is a classic. She also co-authored this very good 2012 JAMA commentary on designing healthcare for multimorbidity.)

Last but not least, although I’m disappointed in the way that the TEDMED talk skewed towards prevention and lifestyle, I can’t say that I’m surprised. Much of what I’ve come across these past few months, as I’ve been learning about healthcare innovation, is skewed towards younger, educated people who either want to prevent disease, or are heavily invested in the management of one particular disease.

This despite the fact that the experiences of older adults drive most healthcare spending, not to mention the impacts on these patients and their families.

In a nutshell

Older adults and those with multiple chronic illnesses are two very large, important, and challenging populations to care for. Improving chronic disease management for these groups is essential, both for the sake of the millions of patients and families affected, and because this group drives the bulk of national healthcare spending.

TEDMED’s team for “Managing Chronic Diseases Better” seems to have special depth and expertise in the prevention of chronic disease. Their recent videochat largely focused on healthier lifestyles, coaching, and prevention, and had very little on the crucial challenges associated with managing — not just preventing — multiple chronic illnesses. They also had little to say about the ways that chronic disease management often should change to meet the unique needs of older adults and their caregivers (such as adaptations when patients develop cognitive impairment). Conditions such as heart failure and COPD weren’t discussed.

I’ll end by quoting the intro to the 2012 JAMA commentary cited above:

“The most common chronic condition experienced by adults is multimorbidity, the coexistence of multiple chronic diseases or conditions.”

If TEDMED wants its Great Challenge to be relevant to really making management of chronic diseases better, I hope they will find a way to address older adults and multimorbidity in future events.

For more of my take on TEDMED’s Great Challenges so far, see this post about the Great Challenges overall, and this post about last month’s videochat on caregiving.

Technology predicted to replace 80% of what doctors do: challenges to overcome for senior health innovations

If you, like me, believe that technological innovations are key to providing better care to seniors at a reasonable cost, then Vinod Kholsa’s recent article on technology and doctoring is a must read.

Kholsa predicts that “computers will replace 80% of what doctors do and amplify their capabilities.”

I myself am all for getting technology to currently do — or help me do — many of the tasks that are involved in my line of doctoring: comprehensive high-quality primary care to seniors with multiple chronic medical problems, as well as to frailer elders with geriatric problems such as cognitive impairment, falls, and overall declines in function and independence.

I especially appreciate Kholsa’s emphasis on the very sensible ways technology can augment clinician’s capabilities (like capturing and processing data), and allow us to focus on what we might do best (the human relationships parts of medicine). I really can’t wait for the day when I can focus on relationships and helping families navigate their healthcare challenges, rather than getting bogged down in data chasing (how often is she agitated at night? when did she poop? what labs has she had? what meds is she taking?) and communication issues (what did the oncologist tell you? what medications have others prescribed for you?).

So my question is, when and how do we make this happen for the healthcare of older adults?

The challenge of getting technology to replace what doctors for seniors do

The thing is, it’s much easier to get technology to do 80% of what my doctor does, compared to getting technology to do 80% of what I do as a doctor.

I’m a healthy 36 year old woman. My doctor mainly needs to help me with prevention, healthy lifestyle choices, and family planning.

Whereas when I provide medical care to my patients, I do much much more. That’s because my patients have multiple chronic problems, many of them at advanced stages, plus often cognitive impairment and physical limitations.

It should go without saying that it’s by providing tech assistance in the care of the more medically complex patients that we collectively stand to gain the greatest benefits, both in terms of improving the quality of care for individual patients (and families!) as well as getting better value for the money society spends on healthcare.

There are certainly some very complicated pediatric patients, and younger adult patients. However overall, the bulk of illness (and healthcare spending) is concentrated in older adults.

Everyone agrees on the need to treat chronic illnesses upstream, and in the outpatient setting. But unfortunately, as best I can tell, most healthcare tech innovations are NOT geared towards facilitating high-quality outpatient care of seniors with multiple problems.

Why? I’ve been trying to figure this out, and here’s what I’ve come up with so far.

Why it’s hard to design useful healthcare tech innovations for the primary care of older adults with multiple chronic problems

  • Medicine emphasizes a disease-based focus, so technology has done the same. Even though primary care doctors must often deal with multi-morbidity (patients having several chronic illnesses), healthcare is still mainly organized and specialized along disease-based lines. Many healthcare tech innovations seem to be following suit, possibly because the developers tend to team up with a specialist in the clinical area. Also, a number of tech innovations are spearheaded by a young tech-savvy person with a given disease. (Will we have to wait until the tech developers hit their 60s and are suffering from multi-morbidity before we get tools designed for people with multiple illnesses? I hope not!)
  • A narrower focus is easier to design solutions for for than a broader one. We already have this problem in research: easier to design and conduct a good study when you focus narrowly on a certain population and exclude the messy complex people with additional health diagnoses (or trouble taking their meds). Unfortunately, in the real world of clinical care for older adults, many patients have messy and complex health needs. And/or don’t take their meds. This has made it hard to apply research findings to them, and is going to make it hard to apply many tech solutions.
  • Older people are perceived as less inclined to use technology. There is definitely something to this. I’m not even very old and I see a big difference in how people ten years my junior are integrating technology into their lives. So this adds to the design challenge for the innovators: designing solutions for seniors means figuring out how to meet them where they are technologically, and how to make things extremely user-friendly. Added twist: the way older people use technology is rapidly evolving, and partly depends on what kind of technology is available.
  • Technology for the health of older adults requires more interfacing with clinicians. In other words, if you design a tool meant to help an older adult manage a medical problem, you need to design something that works for the patient, AND the clinician. Two users is harder than one. Even if it’s a nominal clinical interface (like all the web portals for each app; please note that we doctors will probably not be willing to log into more than 1-2), it’s still more work than designing some wellness app for consumers to use on their own.
  • Technology for the health of older adults needs to be accessible to those with limitations, and accessible to caregivers. Specifically, many older adults have physical limitations (vision, hearing, finger dexterity) as well as cognitive limitations (dementia) which could affect their ability to use a technological health tool. Plus older adults with limitations are often being assisted by family or paid caregivers, so tech tools need to accomodate that as well. Add another two ticks to the list of design challenges.
  • The business case is trickier for the Medicare population. Who will pay for the use of the technology? Will it be the insurer? The patient/consumer? The family? The ACO? These questions seem to be especially uncertain when it comes to the Medicare population. As the perceived business case is very important to the innovators and entrepreneurs, this may be why they aren’t focusing as much on developing solutions for older adults.
  • Healthcare for seniors is perceived as less consumer-driven than healthcare for younger adults. This is probably a combination of insurance issues and cultural issues. More and more younger adults are either uninsured or under-insured for primary care; this means there is more of an opportunity to directly offer them technological solutions for their health needs. Whereas older adults obviously have Medicare. On the cultural side, older people are more likely to accept the old-fashioned model of medicine in which the doctor takes care of things, and you try to do what the doctor tells you. (I know this because my patients often ask me to tell them what to do.) As Kholsa points out, consumer-driven healthcare is a powerful partner for healthcare tech innovation. But since consumer demands tilts towards the young, innovative solutions are tilting towards them too.
  • Regulatory issues are trickier, the more medical a technology solution is. How these mobile health and other new technologies will be regulated by the FDA is up in the air. In the meantime, personalized medical information = protected health information, which means it’s subject to HIPAA. This presumably complicates things if you are trying to design an innovative solution meant to help older patients manage their health. For instance, I recently blogged about patients needing help implementing the multiple recommendations we clinicians usually have for them. Would a solution need to be HIPAA compliant? Probably.
  • Healthcare emphasizes hospitals and transitions more than regular outpatient care. Hospitals are where most of the healthcare dollars are spent, have more data on what’s going on, and are also more visible to most academics and other experts in healthcare. Guess where ACOs are going to be focusing their efforts (and sponsoring technology to support this)? It’s not on the average outpatient senior. It’ll be on the “high-utilizers,” i.e. the ones with frequent hospitals and transitions. In principle everyone wants to help people in the outpatient setting before they become high utilizers, but in practice the attention goes to where the money and clout is.

These are the main factors I’ve identified so far. Does anyone have additional ones to add to the list, or comments on these?

And how to work around these factors? Given the above factors, it seems fairly daunting for a tech start-up to create innovations for the primary care of seniors, unless foundations were to step in and provide a much needed boost. (Is there an RWJF Pioneer-like program for outpatient health innovations, for seniors with multiple medical problems?)

Now I don’t want to say that no one has thought about meeting the outpatient healthcare needs of seniors. But I do see the innovations tilting towards the younger and less medically complex. Which is understandable, but regrettable from a senior/geriatric public health perspective. (See last week’s post for my plea that mHealth help me help my patients, who need more than wellness and help making better lifestyle choices.)

 

In a nutshell:

Healthcare technology innovations are disproportionately oriented towards the needs of younger, more tech-adept individuals. Older adults have more complex healthcare needs. They (and us as a society) stand to gain the most from technology improving healthcare, and amplifying the capabilities of clinicians to provide care. But their healthcare needs are harder for the innovators to meet. So, if we want technology to help us with the healthcare of seniors, we will have our work cut out for us.

My latest list of why it’s hard to provide good tech tools to my patients is above. I’d love some help revising and refining it.

As always, comments and suggestions as to how to harness healthcare tech innovation in the service of better outpatient care for seniors will be much appreciated.

How the new brain scan for Alzheimer’s could help, and won’t help

There’s
a powerful new Alzheimer’s diagnostic test (the new brain scan) on the block, and now we’re all
going to have to decide if we want to use it or not. (My colleagues at GeriPal.org seem generally skeptical.)
This
is an especially relevant question for a outpatient geriatrician like me: I’m
often confronted with the complaint of memory problems, I do a fair amount of
diagnosing dementia (usually on my own, with the occasional referral to a
memory clinic or neurologist), and I do a lot of counseling of patients and
families, usually over the span of months to years.
In
other words, I field memory complaints and dementia diagnosis as they appear in
the primary care clinic, and with the aging population surging into Medicare, I
essentially do what front-line generalists will need to do for millions of
elders over the next 10-20 years.
So
would I order this scan, for someone with memory problems? How would this help
or hinder me, and the families I’m trying to help? What kinds of benefits and
harms will we get for the extra cost of this test, given that there is
currently no cure for Alzheimer’s and not even any reliable ways to slow the
progress of this devastating disease?
A  recent NY Times article highlights these questions, and features some of the first private patients to have the new
scan. It’s a good story, and if you haven’t read it yet, you should.
But
it’s the story of trying to confirm the presence or absence of Alzheimer’s
disease.
Whereas
in my world, the story is about how to help people with memory impairment. Which
is not quite the same story, and involves slightly different questions. In
particular, I don’t just think “Is it or is it not Alzheimer’s?” What I think
about is:
  • Is this
    dementia?
    With patients, I usually explain that dementia means developing permanent
    brain changes that make memory and thinking skills worse, to the point
    that daily life skills are affected. I then explain that Alzheimer’s is
    the most common underlying cause of permanent brain changes. 

  • Is anything
    making this person’s cognition worse than it would otherwise be?     It’s
    especially common to find that medications (such as benzodiazepines for sleep) are making older people worse. Several other medical conditions
    (i.e. hypothyroidism, depression) can worsen cognition and should be
    checked for as well.

  • Any special
    neurological features that I should make note of?     I briefly
    check for signs of parkinsonism, hallucinations (common in Lewy-Body
    dementia), or neurological changes suggestive of subtle strokes. But
    otherwise I don’t spend too much time trying to pin down the underlying
    dementia, unless something strikes me as distinctly odd. Overall, I find
    the principles of helping patients and families with dementia are
    basically the same for the most likely causes of dementia (Alzheimer’s,
    Lewy-Body dementia, vascular dementia).
The
patient and family, of course, have their own questions and concerns. They
certainly do often ask if it’s Alzheimer’s. But we shouldn’t answer that
question too narrowly. Many people don’t understand the difference between
Alzheimer’s and dementia (I’ve had people tell me “Thank God it’s notAlzheimer’s” when I broke the news of likely dementia). But overall, what scares
them is the specter of progressive cognitive disability.
Most
of all, in my experience patients and families want to know:

  • What
    is going on?
  • What
    should we expect for the future? 
  • Will
    this get worse? How fast?
  • What
    kind of help is there? Are there treatments?
  • How
    will we manage?

Back
to the article. What would’ve happened to those patients if they hadn’t had the
scan? And what is still left undone or unresolved after the scan?
Consider
Awilda Jimenez, the woman featured at the start of the Times story, who becomes
forgetful at age 61. Here’s how things usually unfold when I see someone like
her:
  1. I make a preliminary assessment of cognitive
    abilities.     I use a combination of office-based cognitive test, like the
    Montreal Cognitive Assessment, and asking about function, especially IADLs like finance and driving. The article doesn’t say how Ms. Jimenez scored
    on these (one hopes they were checked before offering her the scan), but
    it’s not uncommon for someone with early Alzheimer’s to score 24 on the
    MOCA and have problems with memory and finances.
  2. I also look for exacerbating factors, like
    medication side-effects, or other illnesses.     Let’s assume I find none.
    Let’s also assume the neuro exam is generally benign (other than the
    thinking problems).
  3. I then explain to the patient and family that
    there does seem to be evidence of problems with memory and thinking.     If
    the problems are fairly prominent, we start to discuss the diagnosis of
    mild dementia, and that it’s probably Alzheimer’s. If the problems are
    subtle and things feel inconclusive to me, or if the family wants more
    evaluation, we talk about referring for neuropsychological testing, to get
    further insight into the cognitive problems.
    • Let’s say the neuropsychological testing comes
      back indicating deficits; a common conclusion is that the findings “may
      be consistent with an early dementia such as Alzheimer’s.” Then I get to explain to
      patient and family that it’s probably dementia, probably Alzheimer’s,
      could be vascular or another, generally slowly gets worse but occasionally
      seems to stop
  4. Let’s see how this evolves. I almost always end up telling families that we will need to see what
    happens over the next 6-12 months. 
  5. Practical strategies for right now. I coach families on avoiding
    psychoactive medications and other common causes of delirium. I also encourage them to look for dementia support groups, and try to point them towards resources for learning more about living with dementia.
In
other words, as things currently stand, evaluating memory impairment in someone
who’s early in the dementia process often ends up with our telling patients
that they probably have something bad: mild dementia, most likely Alzheimer’s.
This
uncertainty is frustrating for clinician and patient. (It’s even worse when the
deficits are in the range of mild cognitive impairment, or in that “is this
affecting daily function?” gray area.) So it seems that the new brain scan
should be a boon, with its ability to give a definite yay or nay on whether
Alzheimer’s is present.
Today,
patients and families can cling to the hope that maybe it’s not Alzheimer’s,
maybe it won’t keep getting worse, maybe it’s something else. I have seen
patients and families resolutely set aside the possibility of Alzheimer’s (why
dwell on the possibility of something horrible coming into your life), and
other families obsess over the issue for months. 
Regardless of which approach
they take, in most cases, the cognition keeps getting slowly worse, and 1-2
years later the family is enmeshed in caring for someone who has become quite
cognitively disabled. At that point, they are trying to survive and we clinicians
are trying to help them maintain the best quality of life possible.
Back
to the new scan. I would briefly summarize the benefits and burdens as follows
(for patients in the mild/early stage of symptoms): 
Benefits:
  • Reduces period of clinical uncertainty for
    those patients who in fact have Alzheimer’s.
    • With a positive scan, families could more quickly move into grieving, acceptance, and hopefully planning for the
      upcoming challenges. (Engagement!)
    • Although there is no cure and drugs don’t
      tend to delay progression very much, clinicians can and should focus on the many ways to optimize
      the person’s function. Caregivers can focus on getting from coaching and support.
      Other clinicians should be alerted to the diagnosis and modify their work
      accordingly.
    • A negative scan in someone with
      symptoms would presumably spur a search for the real problem.
Burdens:
  • Takes a fair bite out of the payor’s wallet.
    Currently the scan is paid for out of pocket.
What the scan doesn’t do:
  • Offer an explanation for cognitive impairment
    in those patients who don’t have Alzheimer’s.
  • Identify co-existing vascular disease or other
    cause of progressive dementia.
  • Identify and modify factors worsening
    cognition, like medication side-effects or other illnesses.
  • Tell patients how quickly their dementia will
    progress, and what kind of help they will need in a year. The progression
    of Alzheimer’s is highly variable from individual to individual.
  • Provide dementia education and support to family
    caregivers.
In
short, whether we’ll benefit from the scan really depends on how much families
and clinicians benefit from eliminating that period of uncertainty, as well as
on our ability to provide good dementia evaluation, management, and support to
patients and families. 
Unfortunately
most dementia patients currently get sub-optimal medical care, and their
caregivers get inadequate coaching and support. 
If the scan helps bring people to the resources they need earlier, and
more effectively, I’ll be for it. But if it turns yet another radiologic money
suck and everything else continues as usual, I’ll be disappointed.

In a nutshell:

The pragmatic outpatient evaluation of someone with memory complaints involves much more than answering the question of whether or not there is Alzheimer’s pathology in the brain. 

However, using the new scan to get an answer to that question sooner rather than later could eliminate a lot of the uncertainty and watchful waiting that families and clinicians currently experience. 

If (and this is a big if) this helps patients and families access better dementia care sooner, the brain scans could be quite beneficial.

[Interested in Alzheimer’s diagnosis? Here’s a related post: Four things people with possible Alzheimer’s really need.]

Free the lab data and bring us OpenLabs!

OpenNotes is an interesting and promising idea, but what I really need is for my patients to have OpenLabs.

As in, I need them to have the right to eventually access all their own labs online, regardless of which provider ordered them.

So that then, they can give me access when they ask me to help them.

Better yet would be if patients could easily import their labs into their own personal health record. This way all their labs would be together, regardless of which laboratory or facility performed the testing.

And these labs should be in an interactive, searchable format. That
way, when I’m trying to help them out, I can query the entire dataset,
and find whatever is needed to address the problem at hand.

Recently, I was called to consult on an elderly patient who’s been declining. His labs seem to have been mainly done through Quest.

I’m a Quest provider, and the patient has given me permission to get medical records from the other involved providers.

But when I asked Quest if I could access labs ordered by other providers, the answer was no. According to my Quest representative, if another provider orders labs and wants to share them with me, they need to include an instruction to cc me on the results.

Otherwise, I need to contact the provider directly to get results.

Which I have done, and what I get are crummy fax copies of whatever the other provider’s staff thought were fit to send. 

So to summarize this common situation:

  1. Quest has all the results ordered by various providers, but won’t let any single provider view them, even if the patient gives permission.
  2. Getting all labs for a patient who sees multiple providers means making multiple requests.
  3. The data is then delivered by paper or fax, hence hard to turn into structured data in my own EHR.

I’m a bit frustrated by this. Although I’m generally not a fan of asking doctors to log-in to a company’s web interface (next thing you know you’re keeping track of umpteen websites and passwords; much better to have the info you need easily pushed or pulled into your EHR), I would make an exception for a large repository of lab data, especially if it allowed me to review labs ordered by other providers.

This is because I can provide better medical care to patients when I’m able to review and query all their labs. Specifically, I like to:

  • Look at trends for certain results. So many lab values really require context in order to properly interpret them. Is that creatinine of 1.5 new, or chronic?
  • Search to see if a test has been done before ordering it myself. Hm, has someone already checked TSH and B12 in this patient with cognitive impairment?
  • Quickly gather the relevant lab results related to evaluation of a given condition. Let me think about this anemia. Let’s see what the ferritin, B12, retic count, etc are.

Elderly patients are especially likely to see multiple physicians, and to have labs ordered by various clinicians.

When every provider has to play gatekeeper to the patient data he or she ordered, this makes coordination of care harder than it has to be. Which is why providers often end up ordering duplicate tests: it’s usually easier than going through the hassle of requesting results from another doctor. (Clinicians often don’t really notice the extra hassle to the patient and extra cost to the system.)

If we are serious about empowering patients to get the best care they can, we should remove barriers to patients accessing their own information, to consolidating their own information, and to sharing their own information.

Why should Quest treat lab results as if they belonged to the provider, rather than to the patient?

Well, I haven’t yet researched the issue extensively, but apparently the 2009 law allowing patients to get electronic access to their medical records exempted lab data. In 2011 a new federal rule was proposed (search page for “CLIA”), to allow access, but seems it has not been approved yet.

If you want to learn more on this topic, here is a good recent commentary by Tim O’Reilly, and here is a NY Times article on the subject. There is also a JAMA commentary here, which highlights concerns about patients rapidly gaining access to abnormal results prior to provider counseling, and also comments on how direct access to labs might change the provider-patient relationship.

In a nutshell:

Effective medical care for elders often requires reviewing laboratory results ordered by multiple different providers. Even when all the tests have been done at Quest, it’s currently surprisingly hard to get all the results, because Quest treats the results as if they belong to each provider. Each provider then becomes the gateway for other providers to access the data.

I say patients should have easy access to all their lab data, regardless of which provider ordered it. Just as some clinics are pioneering the model of OpenNotes, we should consider moving towards OpenLabs. Patients should then be able to share those results with whichever additional providers they choose, and transfer their lab data into their personal health record. Technology should facilitate this process.  Sending a provider copies of labs by paper/fax is using antiquated technology and prevents the receiving provider from searching and filtering the lab data effectively.

Would love to hear from clinicians who have found ways to work around this problem.

Am also interested in learning about any personal health records that have been able to import labs from multiple providers and facilities.