[Guess what: the upcoming Health 2.0 Europe conference is featuring a special session focused on how digital health can meet the needs of aging adults! The following post – first published on THCB – is by Maneesh Juneja, who is organizing a “Tools for the Elderly” session at Health 2.0 London.]
digital health
Knocking on Health 2.0’s Door
[This post was first published on The Health Care Blog on 10/16/13. See comments here, including one from Katy Butler, calling for a grassroots movement to demand changes in Medicare that would support more high-touch services and Slow Medicine. Hear hear!]
Real impediments to the Health 2.0 Revolution
Islands of relevance at Health 2.0
Words to keep in mind
“The religion of medicine is not feats of intellect. The religion of medicine is helping to solve the problems of patients, and the compassion involved in the very act of care.”
The religion of healthcare should not be feats of technology. The religion of healthcare should be to help solve the problems of patients and caregivers, and the compassion involved in the very act of care.
Pew Publishes Report on Family Caregivers
I’ve been a fan of Pew’s reports on health and the Internet for quite some time, but now I’m a superfan.
Just today, Pew has published a health report focusing on caregivers: Family Caregivers Are Wired for Health. Based on survey data collected in Aug-Sept of 2012 from 3014 adults, Pew found that 39% of respondents were caring for an adult or child with significant health issues.
The whole report is interesting, but here are some particular findings that caught my eye:
- Pew’s survey found that 30% of adults were caregivers in 2010, compared to 39% now.
- This strikes me as a big jump; I’d love to eventually learn more about just what went into this increase. (Is an aging population and increased chronic disease burden enough to explain such a jump in 2 years?)
- 86% of caregivers have Internet access; of those, 84% went online to research health topics. In comparison, 64% of non-caregivers with Internet access went online to research health topics.
- I’m not surprised that caregivers are doing more research; families often seem more worried to me than patients do.
- 39% of caregivers are helping to manage medications.
- The report doesn’t say how many medications they have to manage. But if you have someone else involved in your care, I’m guessing it’s a lot of medications. I’d love to eventually find out how many meds caregivers deal with on average.
- Caregivers are more likely than non-caregivers to tap both online and offline information sources, such as clinicians, friends/family, or patient communities. Pew reports that “thirteen percent of caregivers were in contact with a clinician both online and offline, compared with 5% of non-caregivers.”
- This is good, 13% of caregivers with access to clinical help online and offline. But we need to make it better.
- One in three caregivers tracks a health indicator for a loved one. Of these, 44% track in their heads, 43% use paper, and 8% use an app.
- As a clinician, I often rely on caregivers to give me the information I need to help address their loved one’s symptom. We definitely need to make it easier for them to track on paper or electronically, as this supports better clinical collaboration between patient, caregiver, and clinician.
- 41% of the caregivers who track end up sharing the tracked information with another person. More than half of the caregivers who track report sharing the data with a health professional.
- This is good and I hope to see these numbers go up over the coming years.
All in all, this is a fascinating report and hopefully will generate some much needed attention to the need to educate and support caregivers.
If this topic is of interest to you, I’d also urge you to read Susannah Fox’s related blog post at e-patients.net, which is here. In it, she remarks
“Let’s stop there and consider: we have a large and growing group of people who are trying to conduct on-the-job training for themselves using the internet. They are more likely than other adults to have internet access and a mobile device. Many of them act like the kid who sits in the front row of every class, taking copious notes, clapping erasers for the teacher (anyone younger than 40, ask an older friend to explain). And yet if this report could be seen as a report card for how we as an online community are serving them, frankly it’s a D+.”
I myself am not sure just what grade I’d give the online community and digital health community when it comes to supporting caregivers…
But I think we can all agree that caregivers are very important, especially to those of who serve the elderly. Caregivers certainly need better support, education, and tools. This report should help spur additional attention to this essential issue.
Nice work, Pew!
ISO medication apps for dementia caregivers
I’ve been interested in apps for the caregivers of elders, but until recently I’ve also, like many physicians, been too busy to seriously research them or try them out.
(As I noted in my recent post on task management apps, selecting and learning to use an app can actually be quite time consuming.)
Time to change that. No, I’m not going to exhaustively research and review all caregiver apps on the market.
But, as I’ve been invited to give a technology talk to a local group of family caregivers later this summer, I would like to see if I can find a few specific apps or tools that are likely to help caregivers.
As this is an event specifically for younger caregivers, I’m expecting a group of caregivers that is generally comfortable with smartphones.
The care recipients, however, are primarily older adults with dementia. So this is a good match for my geriatrics background.
Which apps should I look for? I’m going to start by looking for apps that can support issues that I spend a lot of time counseling families on. As a major such issue is medication management, I’ll start my app search there.
How I usually advise caregivers on medications
- Maintaining an accurate and current list of all prescribed medications is essential. Older adults with dementia tend to see a lot of doctors, and have a lot of medications prescribed. Keeping track of them is crucial because:
- Many medications have cognitive side-effects. These include sleep medications, allergy medications, overactive bladder medications, and others. (Unfortunately, although all these medications are on the Beer’s list, they continue to be often prescribed to older adults with dementia.) When an elder is getting worse cognitively, or has other complaints, it’s essential to be able to review an accurate medication list.
- The treatment plan for any medical complaint should only be made after review of a current medication list.
- Keeping track of which medications the person is regularly taking is important. There is what’s been prescribed – or otherwise is on the list of biologically active substances regularly taken, many of which may be over-the-counter drugs or supplements — and then there’s what’s being taken most days. Although it can be theoretically be useful to have a log of when every single pill was taken, what is usually most useful is to start with a general sense of whether the patient is taking the drug regularly or not.
- For example, many older patients avoid their diuretics because they don’t want to have to pee more often. It’s important to find this out before attempting to increase the dose of blood pressure medication to bring hypertension under better control.
- In other cases, patients are not taking a medication due to financial considerations, or concern about side-effects, or because their cousin Joe had a bad experience with it. All these issues merit a non-judgemental conversation, which can only get started when clinicians are alerted to the fact that patients are not taking prescribed medications.
- Keeping track of how often a person takes “as needed” medications is important. These include medications for pain, for abdominal symptoms (heartburn, constipation), and even sometimes insulin.
- Reviewing the use of “as-needed” medication is needed to track the progression/resolution of a problem, and to inform future medication adjustments.
- Caregivers (and assisted living facility staff, for that matter) routinely underestimate the importance of tracking use of “as needed” medications; I know this because I often get blank looks when I ask how often an older person is requiring their “as-needed” medication.
- Cognitively impaired older adults often need help remembering to take their medications. They also often need help refilling prescriptions.
- This can be a delicate matter, especially for those with only mild dementia who are often resistant to supervision or assistance from others. Still, it’s a real problem.
App features to support dementia caregivers
Given that I find myself repeatedly discussing the above issues with dementia caregivers, I’ll be looking for apps that can support caregivers and clinicians in these arenas. Specifically, I’m looking for apps that:
- Make it easy for families to maintain an accurate and up-to-date medication list. Ideally this would be easy even if the patient sees multiple providers or uses multiple pharmacies (both situations are common among the elderly). It should also be very easy to enter medications and dosages, as well as update the list.
- What I really hope to find are apps that don’t require laborious manual entry of long drug names and dosages. If I can snap a picture of a check, why can’t caregivers snap a picture of their prescriptions and have the medication entered into their list?
- Make it easy for families to share the list with clinicians. I once had a young caregiver hand me her smartphone, so that I could copy the medication list. Which of course was not formatted for the use of clinicians. (All the meds were organized by “morning meds,” “noon meds,” “evening meds,” which is handy for the caregiver but a pain for the busy clinician.)
- At a minimum, it should be easy to print a medication list that can be handed to a clinician. Paper is not yet so outdated; every doctor’s office is equipped to scan paper and enter into its electronic record system.
- Make it easy for caregivers to track the use of “as-needed” medications. A good tool should treat “as needed” medications differently from the others on the list. I would love to find something that encourages caregivers to note when these “as needed” medications are used.
- Bonus if the tool includes a little text field so that caregivers can note how the patient felt after using the medication. (We clinicians need to know whether we are getting successful symptom control or not.)
- Big bonus if the tool can summarize how much “as needed” medication was used over a given interval, either via text or graphic. I have in the past had caregivers keep time charts to track when they gave pain medication for an elderly person with advanced arthritis, and then found myself laboriously counting how many doses in a day, in a week, all in order to adjust the person’s long-acting pain medication. Surely tech tools can make this a little easier for all involved.
Why We Can’t Leave It to Business to Educate Us
[This post was first published on The Health Care Blog on 4/5/13.]
Recently I came across yet another media article with suggestions as to how digital health products can gain more widespread adoption. The writer notes that “we can learn a lot from the pharma and healthcare industries,” and goes on to discuss the importance of engaging the doctor.
This article, like many I read, doesn’t acknowledge the downsides of using pharma’s tactics.
I have to assume that this is because from a business perspective, there aren’t a lot of downsides to pharma’s tactics. Pharma, along with many other healthcare industry players (hospitals, insurance companies, device manufacturers) has overall been extremely successful from a business standpoint.
So if the intent is to help digital health companies succeed as businesses, then by all means one should encourage them to copy pharma’s tactics.
But as we know, what works for business has often not worked well for serving the needs of individual patients, or to society from a health services and public health perspective.
This despite the fact that pretty much all businesses in healthcare proclaim that they are there to serve patients and society. Of course they will say this. This isn’t surprising at all.
What I have found a bit surprising, though, is the extent to which most of the media coverage of digital health is business-oriented and business-boosting. (I suppose this is because tech has always had a very close relationship with business and consumerism.)
Now, I do firmly believe that digital health innovations are absolutely essential to solving the country’s most pressing healthcare problems. I also believe that dynamic entrepreneurial energy is generally better at developing these innovations than are academic institutions or government entities.
But I worry about the extent to which business and entrepreneurs are directing the conversation on which innovations and approaches will best serve individual patients, and society. Business’ track record in this respect is really bad. Which makes sense: once a company has invested time and resources in bringing a product or service to market, they are going to try to sell it to the rest of us, whether or not it’s good for us.
In other words, although we need business innovations to help drive much-needed change in healthcare, I’m leery of letting business dominate the outreach to clinicians and society.
So, here are some related issues that I’ve been pondering lately:
- How to encourage the media coverage of digital health to include a little more “in the interest of patients and the public” perspective?
- How to help clinicians, academics, and health services experts learn about digital health, in a less marketing-directed way? (I’ve been informally polling my colleagues recently: most have never heard of e-patients and know very little about digital health. This means we have hardly anyone without financial ties to industry who can talk to tech journalists or others.)
- How to foster more constructive interchanges between the digital health entrepreneurs, who have terrific new ideas, and health experts, who should be critiquing these new ideas and providing feedback on how the implications of adopting these products at scale, and how these products might be viewed in a broader health context?
For all these questions, it seems we would need to start by providing clinicians and healthcare experts with a way to keep current with digital health trends and technologies. And this way should not be unduly influenced by marketing efforts or entrepreneurial enthusiasm.
How should clinicians, academics, and non-profit experts learn about digital health?
It’s normal for the providers of these new technologies to volunteer to do the job (as pharma has historically done when it comes to new drugs), but we need viable alternatives that have fewer financial stakes in the education effort.
The problem, of course, is that our usual sources of more-objective-information-in-true-service-of-healthcare seem really unsuited to helping us understand emerging digital health technologies. For instance, by the time any high-quality peer-reviewed research is published, the technology studied is likely to be hopelessly outdated. Likewise, expert guidelines and panels take way too long to digest, process, and present their findings. So clinicians can’t keep current by relying on these time-tested methods of curating information.
Also, there is also a volume of information problem. I’ve been trying to learn about digital health for the past six months and it’s like trying to drink from a firehose.
Hence, I’ve been thinking that what I personally really need is a source of up-to-date commentary and information on digital health that is sensibly curated, and tailored to my clinical interests, i.e. the healthcare of medically complex older adults. To date, I’ve found sites that are related to caregiving, or consumer technology for seniors, or healthy aging, or evaluating assisted living. But none about technology for geriatric healthcare in particular.
So here is my latest idea: I’ve recently been wondering if something like the Journal Watch model could be adapted, to help clinicians keep up with key developments in digital health. (I subscribe to Journal Watch General Medicine.)
What I particularly like about Journal Watch is:
- They review several key published articles every week, most of which are clinically relevant. (Occasionally there’s something about an exciting new bioscience breakthrough.)
- They provide a nice concise summary of the research.
- Each article summary is accompanied by a short comment written by a clinician-editor. The comment is by far the most valuable thing to read, since these editors tend to have an excellent grounding in the pragmatic aspects of clinical work, as well as a good understanding of the health-services implications of the study.
For comparison to the idea above, consider something like iHealthBeat.org. It is fantastic that the California Healthcare Foundation provides this service. And yet, I unsubscribed a while back.
Why? The snippets are too varied – nobody has selected items of special interest to clinicians and academics focused on medical care for older adults. Plus, the snippets themselves don’t feel like they’ve been selected and edited by someone who understands my needs and priorities – unsurprising since they aren’t chosen or commented on by another general internist.
Just as Journal Watch is intended to help clinicians keep up with “Medicine that Matters,” we need a Digital Health Watch service for clinicians, tailored for different specialties, to help clinicians and academics keep up with “Digital Health that Matters.”
Journal Watch, of course, isn’t free. But then again, most good sources of information aren’t.
If we had a good method for clinicians to learn about digital health, then we might see more healthcare experts constructively critiquing the efforts of the digital health entrepreneurs.
This might not be great for every company’s business, but could be very good for clinicians, individual patients and society.
Summing it up
It’s understandable that the entrepreneurial digital health community will want to engage and educate clinicians. However, as we’ve seen with pharma and other profit-oriented healthcare industries, there are significant downsides to letting business dominate and direct clinician education.
To date I’ve found that many of my colleagues in academia know little about digital health, or emerging technology innovations. This makes it difficult for medicine’s expert community to thoughtfully engage and critique the ideas of digital health entrepreneurs.
The overall healthcare needs of society would be much better served if clinicians and academics could learn about digital health via sources that have no significant financial conflict of interest. I would love to find a “Digital Health Watch” service similar to Journal Watch.
If you can recommend a high-quality, not-too-business-oriented source of information on digital health for me to follow, please comment or send me an email.