Friday, November 30, 2012

TEDMED's Crisis in Caregiving Videochat: Three Thoughts

Yesterday I listened in on my first TEDMED Great Challenges Live Video Chat. It was on the Crisis in Caregiving. (If you want to watch it, you can find it here.)

If you know me, you know this is a topic near and dear to my heart: my MPH master's project was a blog meant to teach caregivers key geriatric principles, I published a qualitative paper on information-seeking at a caregiving website, and I've spent the last four years collaborating with Caring.com, because I think empowering and educating caregivers is one of the best ways we can stimulate improvements in the quality of care for frail elders.

And of course, I'm now on the prowl for technologies that improve geriatric care, such as those that help elders and caregivers do what needs doing healthwise (they have so much to do!), and that foster effective collaborations with clinicians such as myself.

What did I learn from listening to TEDMED's team of thought leaders in caregiving?


Three things really stood out for me:

1. This team thinks it will take years for significant change to occur, as in at least a decade.

This may be true, but it's a sharp contrast with the predictions in the healthcare innovation community, where people are predicting disruptive healthcare change coming to a hospital and clinic near you, and soon.

I'm not sure who will be right. Technology and the democratization of information have changed many things fairly quickly. If patients and caregivers get better access to health information in the next few years (and get some coaching on how to use this info), that could have a very good effect in helping healthcare reorient towards the needs of patients and caregivers. Plus there's a big move afoot for patient engagement. Won't that change things soon? (Especially if it's paired with a push for better clinician engagement?)

The team also talked about the influence of money and reimbursements. Well, there's another arena that's under unprecedented pressure to change. How soon is that change coming? Hard to say and depends who you ask. So even though healthcare has historically changed rather slowly, I wouldn't be surprised if things look very different in five years.

2. The video chat had relatively little emphasis on any existing pockets of effective clinical collaboration with caregivers.

This was a bit of a bummer to me, as I'm a believer in the Switch approach of identifying bright spots and trying to find successful strategies to replicate.

Now, I know that the overwhelming majority of experiences caregivers have with healthcare is negative. (My own father, at age 61, became critically ill and eventually died during my third year of medical school: I've faced the squad of white coats in the ICU and it sucks. And no, we weren't offered palliative care or the help we needed, and I still feel upset when I think about my family's experience.)

But surely we can find some instances in which caregivers are having a better experience. For instance, we all can think of some primary care doctors who are exceptional at getting to know the whole patient, and integrating caregivers into their work. And there must be some specialty clinics that have found ways to offer better support and education to caregivers.

Alan Blaustein also brought up the point that in his experience, even the best intentioned clinicians can't take the time to see the 360 degree picture of the patient.

Guilty as charged. (Which is why I left my community health center job; too frustrating to always be rushed.)

But why not talk to some of those well-intentioned doctors, and learn more about what might make better listening more feasible. Sure, reimbursements and money matter and who knows when those will change. Still, I'd love to see this team dig in a bit deeper and engage with some clincians who practice in time-pressured settings but are yearning to do better. Or invite an academic who studies clinician-family communication, or better yet, someone who's been involved in an effort to improve the family experience in a clinical setting. (I know I've heard of some exciting innovations to make clinical care more person and family-centered; can someone provide an example?)
 
3. There was little on innovative technologies that can help caregivers.

This surprised me, but this probably is because I've been personally so immersed in learning about tech to improve geriatrics that I must be assuming everyone thinks this is as important as I do.

Obviously, covering tech innovations for caregivers could be an entire university course. Given that this challenge is titled "The Crisis in Caregiving," which is an even broader topic area, the team presumably isn't able to dig into any sub-topic that's too specific.

That being said, technology is one of the areas that I'm personally most optimistic about, in terms of fostering positive changes for caregivers. For example, a fellow geriatrician, Elise Singer, has developed a tool called ShareTheVisit. It's technology that enables family caregivers or others to videoconference in to another person's medical visits. This is a great concept, since it's often logistically hard for family caregivers to participate in medical visits due to work or other responsibilities. (Disclosure: I have no current or planned financial relationship with Elise's company.)

But what's even more exciting to me is that some large medical providers are seriously considering purchasing licenses for ShareTheVisit, which would make it easily available for their providers to use with patients and families.

This I find huge, extraordinary, and fantastic. After all, it's one thing for me, a single tech-oriented geriatrician interested in caregivers, to want to pilot a new tool to better collaborate with caregivers. It's a much bigger thing for a large provider of medical services to take this concept seriously, and be willing to pay to provide this service to patients and families. Let's not get carried away, but really, could we be on the verge of a sea change in how healthcare systems treat patients and families? Let's hope so.

In a nutshell:

Caregivers are essential partners in providing care to elders and others. The country should absolutely do a better job of supporting their needs.

TEDMED's recent Great Challenges videochat reiterated many of the common challenges facing caregivers.
The team seemed less optimistic about change coming soon than I would've expected.

Better engagement of caregivers will undoubtedly require better engagement from clinicians. It would be interesting to me personally if this team could highlight existing bright spots in clinician-caregiver-patient collaboration, and help identify strategies that could be replicated or scaled up. Bonus if this process uncovers some promising technologies or tools that can facilitate this.


Thursday, November 29, 2012

Solving for the National Healthcare problem should start by solving for Medicare beneficiaries

Matt Miller over at the Washington Post proposed a fun idea in his column yesterday: that Obama should tap Mitt Romney, management consultant and data-driven problem solver extraordinaire, to analyze the healthcare mess and propose solutions.

According to Miller, we need "an authoritative analysis that identifies exactly what’s driving our costs so much higher than everyone else’s — as well as a set of lessons we can learn from the nations that do more (including insure everyone) with much less." Followed by a summary of main options and scenarios that could move us towards better care for less (or at least better care for the amount we spend).

And of course we should involve all the "sector leaders" and stakeholders to be part of this commission and presentation of options.

You know, the leaders of those sectors that stand the most to lose from us making healthcare more patient-centered, effective, and higher value per dollar spent. (Sorry but I'm talking about you, insurance companies, hospitals, pharma, and the specialists' lobby (aka AMA).)

Don't worry, the sector leaders won't hijack the process. We can just ask them to "to step beyond parochial concerns to address these questions in the context of the broader national interest."

(Um...I suppose theoretically that might work. My theoretical physicist father also used to tell me that theoretically all the atoms and electrons in a table might move and allow my hand to pass through.)

In summary, Miller is proposing the creation of a commission that can summarize why we are where we are, how other countries do it better, and some key options for how we might move forward constructively.

 

How to improve this proposal


I'm skeptical that Miller's commission would be very successful. But with some changes something similar could be really helpful. Here are my four suggestions for a National Taskforce on Healthcare that really helps the nation move towards better care at a more affordable cost:

1. Make the group focus on the Medicare population. Just solve right off the bat for the 600 pound gorilla in healthcare. This is the most complicated and important group to serve, healthcare-wise. It's pretty obvious why, but I'll name a couple reasons anyway:
  • Beneficiaries generate the bulk of national healthcare costs.
  • They suffer the most from the existing fragmentation and duplication of services (just talk to anyone whose mother or grandmother's been sick lately.
  • They are medically the most complex cases, requiring the most change in how we deliver care.
  • They number in the tens of millions as a patient population.
  • There are tens millions of younger Americans involved in caregiving for the Medicare population. This affect the working population's health and availability to do other work.
  • Medicare finances are the most pressing issue affecting the long-term federal budget deficit.
By the way, solving for the Medicare population means addressing Medicaid and long-term care financing too. Everything the older person needs for health and wellbeing, prepare to fix and improve.

2. Start with academics and other experts without a large financial and political stake. Plenty of academic experts can tell you what the main drivers of our expenses and dysfunction are. (Heck, I could summarize this myself, and could give you good references if I spent a few hours digging through the literature.)

Why ask sector leaders, who can't help but be insanely biased (plus they have their constituencies to answer to)? There are also plenty of well-published and widely-respected experts available who could easily summarize what other countries do.

Start by getting a summary of the problem from the most objective, qualified group you can.

This same group, by the way, can brainstorm scenarios for moving forward. Don't worry, we won't make any scenarios policy without hearing from the stakeholders. We just shouldn't let the stakeholders dominate the discussion from the get-go.

3. Get geriatricians at the table. Figuring out what healthcare for older people in this country should look like means talking to experts on compassionate, comprehensive, whole person-centered healthcare for older people.

Ergo, geriatricians. (Disclosure: I confess to being a geriatrician, and admit to hereby shamelessly promoting my specialty.)

Sure, the geriatricians will advocate for their own self-interest. But that's ok, because our interests as geriatricians have the best match with what patients and families want for themselves, and what the nation needs overall (better care that fits with people's values, at lower costs).

And we have some fantastic geriatricians available who are experts in quality improvement, policy, and making change. Consider our MacArthur geniuses: Diane Meier and Eric Coleman. Plus we have many more that I could nominate (don't worry, I promise to not nominate myself; I'm not qualified plus I'd much rather play the gadfly in the peanut gallery).

Another source of good experts on this subject are family caregivers, and older adults who've cycled through the system a few times. Bring them to the table too.

4. Bring in black-belts in negotiation and masters of communication. It goes without saying that solving for better care at less cost in the Medicare population (aka saving the nation financially) is an enormous political challenge:
  • Beneficiaries and older adults are a vocal and powerful constituency
  • Medicare payments constitute the largest and most reliable stream of income for most of the big sector leaders named above --> massive lobbying and pressure on politicians 
In other words, they don't call Medicare the third rail of politics for nothing.

Which means that once your objective group of experts has come up with some possible solutions, you need expert negotiators present when you bring in the stakeholders to talk turkey.

And then you need master storytellers and communicators to engage in the public in a constructive discussion, so that as a nation we can pick between the several challenging options that we'll be presented with.

Because the average American, beneficiary or no, doesn't understand nearly enough about what a thorny problem solving Medicare is. That needs to change. We need to identify some key options forward, and highlight the trade-offs inherent in each scenario. We need people to understand that every option involves downsides, and we need to highlight the very serious downsides of continuing as we are (such as the current crummy federal support for aging-in-place).

In a nutshell:


We need to convene an ace taskforce to address the National Problem with Healthcare, and this team should focus just on the Medicare population. This is the group that has the most healthcare needs, and where as a nation we'd reap the biggest benefits if we could deliver better care at lower cost.

The work of the National Taskforce should start with experts free of significant financial or political stakes in the process. (Bring in the big bellowing stakeholders later, and have black-belts in negotiation present.)

Geriatricians are experts in compassionate, comprehensive, whole person-centered healthcare for older people. So are family caregivers. Use them on the taskforce.

An effective communication strategy is essential. The American people need to be engaged and informed in order to participate meaningfully in solving this critical national problem.



Tuesday, November 27, 2012

TEDMED and the Great Challenges of Geriatrics

TEDMED started a big project this year : the "Great Challenges in Health & Medicine." These 20 Challenges are "complex, persistent problems that have medical and non-medical causes, impact millions of lives, and affect the well-being of all of America."

I'll admit I was mildly surprised when I realized that not a single one of these worthy issues is specifically about the health care of aging Americans. (See the list below for yourself, and note the absence of the words "Medicare" "aging" "senior" "elderly" "geriatrics" or even "older adult." The closest they come is "dementia," which is almost exclusively a problem of older adults.)

And there I was thinking that fixing Medicare was the most high priority challenge of the next several years.

As in, figuring out how to provide compassionate, coordinated, and effective healthcare to older adults, at a cost that we all -- patients, caregivers, clinicians, society -- can bear and sustain. And this in a time of projected primary care clinician shortages, with a particular shortage of providers trained to meet the unique health care needs of frail and vulnerable elders.

No matter. There is still much common ground that geriatricians can find with the Great Challenges, as all (except childhood obesity) are relevant to better care of frail and vulnerable elders.

Why TEDMED should consider the frail and vulnerable elderly


Because for many Challenges, the typical elder presents a common, and usually more complex, version of the challenge. After all, the elderly have a disproportionately high illness burden and usually suffer from multi-morbidity. This means that they:


Also, as the healthcare needs of older Americans will be driving most of the nation's healthcare spending over the next 30 years, this group desperately needs Healthcare Costs and Payment Systems Addressed.

Last but not least, when the above issues don't go well, millions of elders and caregivers suffer, as do some of the clinicians trying to help them. And hundreds of billions of dollars are spent.

In other words, the knotty problems of health care are knottiest when it comes to frail older people. This is a large population that could really benefit from the creative problem-solving of the TEDMED community.

Plus the nation's finances somewhat hang in the balance.

(But no pressure TEDMED!)

How the geriatrics community can participate in TEDMED's Great Challenges


The next TEDMED conference costs $4950 (scholarships available) and requires a successful application to attend.

Fortunately, the Great Challenges are a more accessible affair. The idea is to foster an "open, ongoing dialogue" in order to "move toward a broad-based understanding of each challenge." Each Challenge has a website and a team (a "multi-disciplinary group of leaders in their fields") leading the discussion. Questions and comments can be posted on each Challenge's website. Use of Twitter and other social media is encouraged. Virtual panel discussions are already underway, featuring the teams conversing with each other and fielding questions from an online audience. (Read more about it all here.)

If you have an interest or passion for any of these Great Challenges, I'd encourage you to participate. Bonus points from me if you bring a special focus on the elderly.

And what will be the outcome of all this discussing and exploring of knotty problems?

Hard to say. TEDMED states that the mission is "not to solve these complex problems." Rather, the idea is to "move toward a broad-based understanding of each challenge," which then will "set the stage for truly effective action."

I myself am a bit antsy for effective action that actually changes things down here where the rubber meets the road. Will TEDMED's Great Challenges project eventually lead to specific and scalable improvements in the care of geriatric patients?

Who knows. It certainly can't hurt (unless it only leads to glamorous high-tech interventions that work mainly for the digital natives, and the entrepreneurs eager to sell things to them).

Advocates for better geriatric care, jump in. Learn from the others joining this TEDMED project. And speak up for the needs of elders, their caregivers, and their clinicians.

The 20 TEDMED Great Challenges:

Monday, November 26, 2012

Care coordination dinosaur still lumbering and STILL don't have the info requested

Wow. I knew it could often be a pain to get medical records from another doc, but until recently, I hadn't appreciated just how convoluted the process could be. (That's because until recently, I practice in conventional office settings, where getting records was a task delegated to other staff members. But now I'm trying the micropractice model so doing it all myself, which is instructive.)

For those interested in coordination of care (or wondering why their PCP never seems to know what the other doctors did), let me update you on the latest twist in my quest to get information from the orthopedic surgeon.

A few weeks ago I received the snail mail letter, informing me that I had to submit my request for the surgeon's notes to the hospital with which he is apparently affiliated. So I faxed the request on 11/15/12, including a release of information signed by the patient's DPOA.

Today I finally get a fax back.

No records included.

Instead, I'm informed that the request can't be completed because it's missing DOB. They fax me part of my own fax. It does happen to include the patient's DOB at the top (my EHR automatically inserts along with patient's name), but I guess somehow they missed that part.

They also include their own release of information form, which has to be signed by the patient.

Grrr.

I call the medical records office. I speak to a very nice person who knows nothing about the fax I got earlier, but advises me to fax my request and signed release of information form again. He does promise he'll try to take care of it soon, but warns me that though he'll be able to provide the discharge summary I requested, it will take longer to get the surgeon's initial consultation. That's because he'll have to request those from the surgeon's office (you know, the one I contacted in the first place), and it can take a while to hear back from them.

Oh and, I discover that a second copy of their fax has arrived in my fax inbox. This version includes a page about an entirely different patient. So much for the current system protecting one's confidentiality.

So, more waiting for the information. I haven't felt that it's critical to the work I'm doing right now on the case, but I'd like to see it just because I like to have checked everything.

In a nutshell:

It can be incredibly slow and aggravating to try to get medical records from another doctor. (No wonder support staff in medical offices often look so stressed out.) The current paper-and-fax based system is also fraught with potential for error, such as faxing the wrong patient's information to who-knows-where.

I can't wait for the day when the new dawn of healthcare technology makes these kinds of problems a quaint story from the past.

Wednesday, November 21, 2012

The Managing Meds Video Challenge: Where are the seniors? And can we get usability please?

If I had to pick one area in which I thought tech solutions could offer the maximum bang for the buck in improving healthcare for seniors, it would be medication management. (If you want to know why, see further below.)

So I was thrilled to notice a few weeks ago that the Office of the National Coordinator for Health IT was sponsoring a Managing Meds Video Challenge. In this challenge, people were invited to submit videos demonstrating "how one can use technology to manage meds effectively and improve health and safety."

Yeah! I was sure this would help me find technologies to improve med management among elders. (I have a list of my technology priorities for med management at the bottom of this post.)

Well, I just viewed the six winning videos. I have bad news, and good news.

The bad news for GeriTech:

  • Not a single older person (aka Medicare beneficiary) in the winning videos!
  • Nobody taking more than 3-4 meds! One young person seems to be taking two meds, and then has to increase to four because of her wisdom teeth. Sigh. Where are the people taking 6-12 chronic meds (aka high cost Medicare beneficiaries)??
  •  Smartphone apps require laborious typing in of the medication name and dose. Crummy usability, in my mind, especially when one has more than 2-3 medications.
  • In other words, nothing that I'd think of prescribing to my patients.

 

The good news for GeriTech:

I was on the point of thinking that NOTHING here is going to help me and my patients with med management, when suddenly, I saw one of the things I've been looking for:

The patient uses smartphone to take a picture of the bar code on prescription bottle.

Ding! Ding! Ding! Ding! We may have a usability winner! There it is, folks, the technology I said I wanted for outpatient med reconciliation: something where you can scan the bottles and get the info on the prescription, instead of laboriously entering it yourself.

There's a catch though, and it's a big one: This technology is used by Walgreens and CVS as part of their prescription refill app. As far as I can tell, it doesn't help you enter the medication into your reminder system, or into a list that can be shared with other providers and pharmacies. It just helps you buy more medications from these big pharmacy chains.

Bummer. 

Still, if Walgreens can use that technology, so can some other app developer. Maybe someone is even working on this now?

In a nutshell:

The solutions proposed by the winning Managing Meds Videos don't look very usable for patients with significant med management needs (i.e. the ones who stand the most to gain from tech helping them with med management).

Perhaps ONC should consider a video challenge specifically addressing the needs of seniors and caregivers...they are also known as the Medicare population and I hear their needs are of grave concern to the federal goverment these days.

I do love the concept of using smartphones to scan prescription bottles. This would be a better way to enter prescription info into apps that are meant to track and organize medications.

More on why medication management is so important to improving geriatric care:

Because:
  • Meds are a prime source of adverse events in elders. In elders, falls and confusion are especially common, as are dangerous interactions due to polypharmacy.
  • Almost every clinical problem we address relates in some ways to the medications a person is (or isn't) taking. High blood pressure? Make sure you know everything that has been prescribed, AND what the person is taking. Ideally you'd know what had been prescribed and discontinued in the past too.
  • Clinicians often do not access an accurate list of what has been prescribed, and what the elder is taking. This is especially true in the case of those many elders who see multiple prescribers.
  • Meds cost a lot of money, both to the system and to the individual elders.
  • Many medications, upon careful review, should be discontinued or reduced (or occasionally even increased). For patients and caregivers to request a good medication review, you need to start with a good accurate list. Ideally this would include when the medication was started and for what purpose.
  • Taking multiple medications is burdensome! It's a huge logistic effort for the many elders who must take meds at three or even four times of the day, and turns into a major effort for caregivers.
  • Medications taken PRN must be properly tracked, for elder and clinician to make effective progress in managing the symptom at hand. In practice though, I've found this hard. ("Tell me again: how often did you use this medication? You don't remember? Do you remember how you felt afterwards?" )
  • Medication reconciliation after hospital stays currently is difficult. It's confusing to elders (and their primary care doctors) when medications aren't properly reconciled after a hospitalization or other major event. 

I could go on, but I won't right now. Suffice to say that I think we sorely need technology that does the following:
  • Allows elders and caregivers to easily maintain an up-to-date list of medications, regardless of prescriber, pharmacy, or hospital used.
  • Allows all providers to easily access the above list.
  • Helps elders take all their medication.
  • Spots medications that aren't taken as prescribed, so that clinician and patient can discuss and work out a solution. (Facilitate engagement!)
  • Makes it easy for primary care providers to reconcile what the patient is taking with what has been prescribed (see my prev post for why it's currently so darn time-consuming)
If you know of any tech or tools that work well for the needs above, please comment or send me an email (drlesliekernisan AT gmail).

Tech developers (if any of you happen to be reading): can you integrate zapgun entry (i.e. smartphones taking pics of prescription bottle codes) for your med management apps?

Tuesday, November 20, 2012

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.]

Friday, November 16, 2012

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.

Wednesday, November 14, 2012

Do We Need Less Technology or More in Geriatrics?

In geriatrics we tend to lean towards a philosophy of "less is more." But is this the approach to adopt when it comes to technology and the health care of older adults?

This is the issue I explore today, via a guest post on Hasting Center's Over 65 Blog.

If you aren't familiar with the Over 65 Project, I highly recommend you take a look at their About page. The project is sponsored by the Hastings Center, a non-profit bioethics research institute, and is supported by an impressive list of established academics and other experts in aging, healthcare, ethics, and policy.

The goal of the Over 65 Project is to foster "a rethinking of the progress-driven, technology-hungry model of medicine that feeds that system and consumes a large share of resources. That model has put an unbridled pursuit of cure, not care, in the saddle, a balance that must now shift to a better balance in the direction of care."

The Project has articulated the following five key goals:


I myself agree with the Over 65 Project on goals 1, 2, 4, and 5.

My post for them addresses #3. I personally believe the right kind of technology will facilitate better care, and I think technology, properly applied, can help address goals 1, 2, 4, and 5.

The hard part is defining and finding the right technology, and learning to apply it successfully, at scale.

I hope this blog, in collaboration with others such as the Over 65 Blog, can help. Again, this blog's purpose is: to document the practical problems we face when we try to care for the geriatric population, and to discuss how technology can help or hinder us.

Clinicians, consider guest posting here or on Over 65. To all, comments remain encouraged and appreciated.

Tuesday, November 13, 2012

Solving for patient engagement requires solving for clinician engagement

Patient engagement has been described as the "Blockbuster Drug of the Century." But can one effectively work on engaging patients, redefining the role of the patient, and redesigning healthcare tools, without engaging and designing for clinicians as well?

I don't think so. That's because my vision of ideal health care is grounded in the idea of constructive collaborative relationships between patients, caregivers, and clinicians, in which clinicians serve as expert consultants in helping patients meet their healthcare goals. This is especially important in geriatrics, which emphasizes an approach based on thoughtful individualized care, tailored to the patient's medical condition and preferences.

But as I've been following trends in healthcare innovation for the past six weeks, I've repeatedly come across patient-centered projects which seem...well, overwhelmingly patient-centered.

As in, the viewpoint of clinicians who would presumably be interfacing with these engaged and empowered patients seems a bit under-represented.

Here are two examples:

  • TEDMED's "Role of the Patient" Great ChallengeAmong other questions, this challenge asks that people consider "How is 'power' shared among all stakeholders and how should it be shared?" This is an extremely important issue and I'm glad to see TEDMED addressing it. But I was surprised to see that the expert team assembled to lead the discussion doesn't very obviously include a practicing physician. (I initially thought there was no physician at all, but then realized that Ted Eytan, listed as a director at The Permanente Federation, is an MD and family physician. I assume it's an oversight that his degree isn't listed on the team page, and it's unclear to me whether he is still practicing.)

I love both these projects. Still, I would like to see a more visible engagement with the practicing clinician's perspective, and more emphasis on how to get the average clinician to work more effectively with a more engaged patient.

Why bring in clinician perspective when solving for patient engagement?

Let's consider the two examples above.

For the patient health record project, the primary goal is to give patients a version of their record that is meaningful and helpful to them. However, it's also expected that patients will be bringing these records to other clinicians. So the record really needs to be designed to serve two key categories of user. I'm very glad the project is planning to bring in some physician reviewers. In particular, I hope the group will bring on more than one clinician, as there are several different clinical arenas in which physicians need to review lots of external medical information. The ones that jump to my mind are: primary care providers for complex adults, emergency room physicians, and hospitalists. All three groups routinely need to review a comprehensive patient record, but will have somewhat different needs and priorities as they try to help patients.

I also hope this group will push the designers to design for medically complex patients. Solve for the tough and common scenarios (i.e. Medicare patients with DM, CHF, COPD, OA, and CKD), not just the easier scenario of the healthier younger patient. Make sure that patient record really does work when the patient has a lot of medical problems going on.

As for the TEDMED Role of the Patient project, it seems clear that the role of the patient in large part represents a complement to the role of providers. I don't see how you can talk about one without the other. However, a tricky issue here is that we overall need physicians and other providers to change the way they see their role, so we should be careful about working around physicians as they are. (A story I've heard more than once: some physicians respond to empowered geriatric care managers by condescendingly asking "When did you graduate from medical school?" Ouch.) Physicians have also historically dominated healthcare, and I suspect that many patient-centered projects pull away from physicians in order to get as far away as possible from the paternalism and physician-centrism that still exists in medicine.

Still, in the end, when it comes to complex shared decision-making and constructive collaboration, patients will need to work with physicians, and other clinicians. So it should be important to include physicians in these conversations, preferably physicians who have experience in fostering change among other physicians, under real-world conditions. (Tom Bodenheimer and Gordon Moore come to my mind; both have spent a lot of time thinking about how primary care doctors actually practice under real world constraints.)

In summary, if patient engagement is a priority, let's design solutions that work for patient AND help clinicians become the partners patients need and want us to be. After all, when patients engage, they engage with clinicians, so it's good to bring pragmatic clinicians to the problem-solving table. (Also good to think about leveraging clincians' intrinsic motivation.)

Last but not least, if you're wondering what exactly patient engagement is, and whether it's the same as patient empowerment, I like this definition which I found in a 2011 article from the American Journal of Public Health:

Patient engagement describes “active participation in health care, including accessing appropriate care, attending and preparing for appointments, and using additional available resources to maintain a high level of involvement in care.” (The same article is actually about health care empowerment, which it describes as "as the process and state of participation in health care that is characterized as (1) engaged, (2) informed, (3) collaborative, (4) committed, and (5) tolerant of uncertainty.")

You may also enjoy this RTI white paper on "Patient Empowerment and Health Information Technology," prepared in 2011 for HIMSS.

Update 11/30/12: The Patient Health Record Re-design Challenge now has three internal medicine physician reviewers listed: Henry Wei MD, Presidential Innovation Fellow; Farzad Mostashari MD from ONC, and Sophia Chang MD MPH from CHCF. Yeah! Can't wait to see what the winning design looks like. We need more projects like this, to make things more usable for patients AND clinicians.