caregivers

When it comes to the health care of a frail older person, families really need a good personal health record (PHR) system. So I am once again preparing to take a look at what’s available, in hopes of finding something that I can more confidently recommend to the families I work with. (To see what medical info I urge families to track, see this Geriatrics for Caregivers post.)

I have — yet again — met a family with reams of paper health records. On one hand, they’ve done very well: at our first visit they were able to show me labs, MRI results, and even some specialty consultations from last summer. They even had a hospital discharge summary, although unfortunately not the one from the most recent hospitalization.

And they’d taken steps to digitally organize, having scanned several key items, as well as created an online space providing shared access to their parent’s information.

So this is better than the situation I often encounter, which is that an elderly person has seen multiple outpatient doctors, has been hospitalized in a few different facilities, and no one has a copy of anything handy. (See why new elderly patients are a killer in primary care? If there is no data you fly blind, if there IS data it can take hours to review it.)

Still, there are clearly many ways a little well-designed technology could improve things for this family – and for the doctors trying to help them.

Here are the problems we have right now:

  • Hard to search the whole pile, whether on paper or via the family’s online repository of  PDFs. These were not OCRed and searchable until I manually converted them with my own PDF editor,  after which I had to upload them to the patient’s chart in my EMR. Now each file is text searchable (for me), but the pile still is not.
  • Cannot trend the labs. Figuring out what has happened to this patient’s key lab values over the past year has been very labor-intensive. This remains a problem once the lab data is uploaded to my EMR, because it’s still in PDFs which have to be looked at one at a time. Being the nerdy doc that I am, I’ve spent a fair bit of time creating a note that summarizes the key lab data over time. Ugh. Better than nothing but a far cry from being able to graph and trend the patient’s labs as needed.
  • Takes ongoing time and effort to get records from the hospitals and other involved doctors. Kudos to this family for being diligent and persistent in asking for copies of everything they can. But wow, it’s a lot of effort for them, and I can tell you that in my practice so far, I’ve generally had to expend a fair amount of energy repeatedly asking for information from other providers. (And then I’ve had to try to organize all this info which comes in as scanned images via fax. Oy!)

Continue reading “In Search of a Really Usable PHR”

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I recently attended the flagship Health 2.0 conference for the first time.

To avoid driving in traffic, I commuted via Caltrain, and while commuting, I read Katy Butler’s book “Knocking on Heaven’s Door.”

Brief synopsis: healthy active well-educated older parents, father suddenly suffers serious stroke, goes on to live another six years of progressive decline and dementia, life likely extended by cardiologist putting in pacemaker, spouse and daughter struggle with caregiving and perversities of healthcare system, how can we do better? See original NYT magazine article here.

(Although the book is subtitled “The Path to a Better Way of Death,” it’s definitely not just about dying. It’s about the fuzzy years leading up to dying, which generally don’t feel like a definite end-of-life situation to the families and clinicians involved.)

The contrast between the world in the book — an eloquent description of the health, life, and healthcare struggles that most older adults eventually endure — and the world of Health 2.0′s innovations and solutions was a bit striking.

I found myself walking around the conference, thinking “How would this help a family like the Butlers? How would this help their clinicians better meet their needs?”

The answer, generally, was unclear. At Health 2.0, as at many digital health events, there is a strong bias toward things like wellness, healthy lifestyles, prevention, big data analytics, and making patients the CEOs of their own health.

Oh and, there was also the Nokia XPrize Sensing Challenge, because making biochemical diagnostics cheap, mobile, and available to consumers is not only going to change the world, but according to the XPrize rep I spoke to, it will solve many of the problems I currently have in caring for frail elders and their families.

(In truth it would be nice if I could check certain labs easily during a housecall, and the global health implications are huge. But enabling more biochemical measurements on my aging patients is not super high on my priority list.)

Continue reading “Knocking on Health 2.0′s Door”

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What does it mean when an app wins a major foundation’s developer challenge, and then isn’t updated for two and a half years?

Today, as I was doing a little background research on task management apps for caregivers, I came across a 2012 post listing Pain Care as a handy app for caregivers.

Pain is certainly something that comes up a lot when it comes to geriatrics and supporting caregivers, so I decided to learn a little more about this app.

“The Pain Care app won the “Project HealthDesign” challenge by the Robert Wood Johnson Foundation and California HealthCare Foundation,” reads the descriptive text in the Google Play Store.

Well, well, well! RWJF and CHCF are big respectable players in my world, so I was impressed.

But then as I looked at the user reviews, I noticed something odd. Namely, that the most recent one seems to be from April 2012, which is like 2-3 generations ago when it comes to apps.

And furthermore, the app itself was last updated in February 2011. This is like a lifetime ago when it comes to apps.

I decided to download the app and give it a whirl. It’s ok. Seems to be an app for journaling and documenting pain episodes, along with associated triggers. Really looks like something developed by doctors: one of the options for describing the type of pain is “lancinating,” and in a list of “side-effects” (side effects of what? the pain medication one may have just taken?) there is the option to check “sexual dysfunction.” Or you could check “Difficulty with breathing.” (In case you just overdosed on your opiates, perhaps.)

The app does connect to a browser-based account where I was able to view a summary of the pain episode I’d documented. It looked like something that one should print and give to a doctor, and in truth, it would probably be helpful.

Setting snarky comments about the vocabulary aside: this app actually looks like a good start for a pain journal. But it needs improvement and refining, in order to improve usability and quality. Also, although I don’t know much about app development and maintenance, I assume that apps should be periodically upgraded to maintain good performance as the operating systems of iPhones and Android phones evolve.

Continue reading “When Foundation-Approved Apps Founder”

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

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

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

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

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

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

Culture change is necessary but not sufficient

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

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

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

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

Why it can be hard to help people in the hospital

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

Continue reading “Creating Conditions for Humanity in Hospitals”

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Have I gotten to the end of the beginning in developing tools that help people take care of themselves?

With the recent release of Unfrazzle, an app for caregivers, I believe I have. Unfrazzle builds upon the learnings of Zume Life and Tonic, earlier apps I developed. There were key lessons from hundreds of users and family caregivers that influenced Unfrazzle’s product design, driving it in directions very different from and hopefully much more useful than what you might expect.

These key lessons, explored in more detail below, I group into three themes:

  • Care regimens constantly vary, and so tools must accommodate such variation
  • We live in a network of mutual caregiving, and simple notions of “the patient” or “caregiver–care recipient” match few people’s reality
  • Living, yes living, is much more important than adherence
  • For those unfamiliar with Unfrazzle, here’s a brief description:It is an iPhone app (Android coming soon) that helps users remember and keep track of anything they do to take care of themselves and their family (parents, friends, children, pets), and to stay in-sync with other caregivers in their family. Unfrazzle is a Design-It-Yourself app — it essentially provides a platform, a framework that the user then shapes to meet his own ever-changing needs.

    If that sounds clear as mud, try this: take your favorite pill reminder app, and imagine that you can change all the screens and forms to accommodate any health & wellness activity (not just pills but also other things such as exercises, moods, symptoms, observations, and chores). Then imagine that you can share any of your data with others also using the app, so that you can see each other’s entries. Imagine you can even allow others to make entries for you, then you’ve got the gist of Unfrazzle.

    Care Regimens Constantly Vary

    From the start,  beginning with Zume Life, our focus has been on making it easier for people to remember and track their health regimens. We began by targeting a simple, logistical problem — in our busy lives it is easy to forget little details.

    Our idea was that adherence would be improved if we had a memory aid.

    Our tool had to be somewhat flexible, because we took the approach that we could not possibly know everything a person might be doing for his health. For example, allowing a person to include their supplements in their list of medications, and not just their prescriptions.

    Continue reading “Self-Care and Caregiving Apps Development”

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    What user personas do healthcare technology designers and entrepreneurs have in mind as they create their products? And how often is it the family caregiver of an elderly person?

    This is the question I found myself mulling over as I wandered around the Health Refactored conference recently, surrounded by developers, designers, and entrepreneurs.

    The issue particularly popped into my head when I decided to try Microsoft Healthvault after listening to Microsoft’s Sean Nolan give a very good keynote on the perils of pilots and the praises of platforms (such as HealthVault).

    As some know, I’ve been in search of apps and services that can help older adults and their families keep track of lengthy and frequently-changing medication lists. For years now I’ve been urging family caregivers to maintain some kind of online list of medications, but so far I haven’t found a specific app or service to recommend.

    Why? Because they all require way too much effort to enter long medication lists. Which means they are hardly usable for my patients’ families.

    Could HealthVault do better? Having heard generally promising things about the service these past several months, I signed up and decided to pretend I was the daughter of one of my elderly patients, who had finally decided to take Dr. Kernisan’s advice and find some online way to keep track of Mom’s 15 medications.

    Sigh. It’s nice and easy to sign up for HealthVault. However, it’s not so easy to add 15 medications into the system. When I click the “+” sign next to current medications, I am offered a pop-up box with several fields to complete.

    Continue reading “Designing for Caregivers”

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    Terry is a particularly difficult patient.  She is not hard because of her cancer, which is in remission, nor is there a problem with pain, of which she has little, and Terry is not particularly demanding for the nursing staff.  No the real problem, the challenge, the thing that makes her so difficult is that Terry is married. Terry is married to Dr. P and he is a particularly difficult man.

    Terry’s husband loves Terry very much.  He wants her to have the very best care.  Dr. P makes certain that all the doctors know everything that is going on, all the time; he makes sure the nurses are on top of every detail; he demands the best from the all the hospital staff.  In fact, Dr. P works so hard to control Terry’s care, to stay on top of her case, to monitor every moment, it is nearly impossible to take care of Terry.

    There are many challenges for doctors taking care of other doctors or their families, or, in reverse, there are many challenges for doctors when they seek care for themselves and their families.  The result of this conflict is often inferior medical care.  Therefore, wanting to honor and help doctors get good quality treatment let us take a moment to review the doctor verses doctor verses medical system dilemma.

    First, it is hard for doctors to decide where to go for medical care.  If you stay in the same community where you practice you lose some privacy and perhaps even respect in the physician community.  Who do you chose and how do you avoid offending the other physicians you do not use?  If you leave your own area, you lose the convenience and familiarity of getting care close to home.

    Continue reading “The Doctor as Patient”

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    Nearly two million Americans work as home health aides and personal care aides — a number that is projected to climb above three million by 2020.

    This is low-paid, low-status, exhausting work. A typical shift might include helping a client bathe, preparing her meals, changing her linens, helping her walk safely to the store, sweeping her floors, and helping administer medications (even though in many cases these aides aren’t licensed to do so). There is also a complex burden of emotional labor: comforting, cajoling, making small talk.

    Most home aides are hired and paid by third-party agencies, which are often hugely profitable, in part because domestic workers have lacked minimum-wage and overtime protections under the so-called “companionship exemption” to the Fair Labor Standards Act.

    After years of organizing by the National Domestic Workers Alliance, the Paraprofessional Healthcare Institute, and other groups, the Obama administration issued a preliminary regulation late last year that might finally bring an end to that exemption.

    Continue reading “The Wages of Home Care”

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    Although healthcare providers are making progress in adopting health IT, Americans seem to be resistant to change to Electronic Health Records (EHRs). In fact, only 26 percent of Americans want their medical records to be digital, according to findings from the third annual EHR online survey of 2,147 U.S. adults, conducted for Xerox by Harris Interactive in May 2012.

    Last month the Institute of Medicine issued a seminal report entitled “Best Care at Lower Cost: The Path to Continuously Learning Health in America.” The report estimates the American healthcare system suffered a $750 billion loss in 2009 from inefficient services and administrative expenditures. The report is grounded on the principle that effective, real-time insights for providers and patients which result in collaborative and efficient care depend on the adoption and use of digital records.

    As people are naturally resistant to change, education will be key in gaining support among Americans for the transition to EHRs. If providers can help patients understand “what’s in it for me,” that will likely go a long way in making Americans feel more comfortable with the switch to digital.

    Let’s take a look at five ways EHRs directly impact the patient. For these examples, we’ll use a fictitious patient named “Joe”:

    • Health Information Exchanges (HIE): HIEs work on the principle of a network – they grow stronger as more participants join. If Joe’s primary care doctor switches to digital, that’s a great step in the right direction. However, it isn’t truly meaningful until his primary care doctor joins an HIE and begins sharing Joe’s patient health history, medication history, lab results, family and social history and vital statistics with his specialists, emergency care providers, and so on. This sharing of information helps ensure that Joe gets the best quality of care, because all of his providers will be in sync and have the most up-to-date information. It also helps reduce the amount of duplicate exams and labs Joe will be asked to give.
    • Continue reading “Five Reasons Americans Should Want Electronic Health Records”

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    Both participants and caregivers in long-term care programs face a myriad of difficulties. Participants with long-term services and supports needs often have many health issues, meaning they are in constant transition between care environments and providers with their needs ever-evolving. As a result of visits to a number of doctors on a regular basis and the number of providers who support them, the participant’s information lives in multiple locations. This can lead to discrepancies between providers and the participant having to constantly provide the same information.

    Caregivers, especially family members, are also facing great challenges. It’s a full-time job to care for someone in the home – it takes nearly 40 hours a week – and searching for a trusted service provider to take over can be another job in and of itself.

    The root of the problem is that many long-term care programs are focused on the providers and not necessarily the people – those receiving the services and those providing them. Often, no one has the full picture of the participant’s health, which can lead to suboptimal care. An ideal situation is for everyone involved with the participant to be up-to-date and have a full-picture of their health and well-being at all times. When they are, services can be administered effectively with less risk for everyone involved.

    Continue reading “Refocusing Long-Term Care on People: The Three I’s  ”

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