Les Morgan

Design for Nature in Dementia Care

Design for Nature in Dementia Care by Garuth Chalfont is the best book I have seen on how contact with the natural world can help people affected by dementia. It offers ideas for activity planning, landscaping, and environmental design in dementia care. Well-designed in format, it is easy to read and includes many helpful illustrations. Family caregivers will find lots of ideas for things that can be done at home. Institutional planners will benefit from design and landscaping tips for nursing homes and long-term care facilities. The book draws on interdisciplinary research evidence from environmental psychology, neurology, architecture, nursing and dementia care practice.

Full review continues after the jump...

Buy Design for Nature in Dementia Care at Amazon.com

Maintaining a connection to nature can be an important component of caring for a person with dementia. Direct access to nature has been shown to enhance verbal expression, reduce agitation and aggression, increase appropriate communication, and increase attentiveness to the environment in persons affected by dementia. Since dementia usually affects short-term memory, having a view of nature and the outdoors can help a person maintain orientation to time of day and the season of the year. It even improves staff morale!

Even if someone is unable to go outside, there are ways to bring nature inside through the use of windows, natural light, indoor plants, cooking, and cut flowers. A wide range of handicrafts and indoor horticulture activites are possible, both outdoors and indoors. Design of an indoor activity room is discussed, with many examples of simple activities that incorporate natural components.

Contact with nature includes interaction with animals and pets. Studies have demonstrated positive effects of pets. One study published in 2004 examined the effects of installing an aquarium n the dining room of a special care unit for people with Alzheimer's disease on food intake, disruptive behavior, and staff morale. Improvements in all those areas were noted after four weeks, as well as gain in body weight of the residents.

The beauty of this book, however, is not just in giving activity suggestions, but in showing how the activity can be done to give maximum benefit in the setting of dementia. Arranging flowers in a vase is an example of a simple task that can be done in almost any location by bringing the materials to the resident. When arranging flowers, conversations can develop because the task at hand and the closeness of a friendly, interested person will prompt social interaction. If seated at a table with a group, a caregiver can gently encourage social interaction during the activity. This mix of natural stimuli with human interaction is the key to the therapeutic paradigm of the book.

The activities suggested in the guide operationalize "The Prosentia Hypothesis", a model of nature-based interaction found in the professional literature. The Prosentia Hypothesis specific to dementia is that if a person with dementia has a sensory connection to nature in a supportive relationship with another person, then interaction with this triangular dynamic can help the person to maintain a sense of self, and may help contribute to their positive personhood. The mechanism is a synergystic relationship between sensory stimulation, which tends to continue to be directly perceived even in dementia, and communication with a person within the same natural context. The hypothesis is interesting in itself, but the benefit of the book is how the author gives practical suggestions for how to actually do supportive activities. There is a checklist for connection to nature in a residential care home that is easy to use to rate a facility for implementation of this approach.

The book has an entire section devoted to safety and freedom issues related to walking and mobility, including tips on path design for institutional settings. Various studies have shown that walking and strength training for people with Alzheimer's and related dementias show improvement in chair-raise time, standing time, night-time sleep, agitation, mental function, capacity to communicate, and other important metrics. Nature-based activities also can have great benefits for persons without dementia. A possible benefit of nature-related outdoor excursions in younger persons is that exercise is associated with reduced risk for incident dementia among persons 65 years of age and older. These results suggest that regular exercise is associated with a delay in onset of dementia and Alzheimer's disease. Fitness and mobility activities can be connected with nature at any age or mental status. "Use it or lose it" is the simple truth.

The book is one of the Bradford Dementia Group Good Practice Guides, a series of jargon-free, evidence-based, good practice guides for those involved with the care of people with dementia and their families.

Garuth Chalfont, PhD ASLA, is the Director of Chalfont Design, an environmental design consultancy. His recent work has focused on providing enabling environments for people with dementia and distressed behavior. This research and design project was funded in part by the National Health Service (the NHS) in the UK. Dr. Chalfont also has been creating healing environments in the USA since 1989 through Chalfont & Associates, located in Greenbelt, Maryland. He previously was associated with the School of Architecture, University of Sheffield. He is a member of the American Society of Landscape Architects, the British Society of Gerontology, the International Psychogeriatric Association, and THRIVE UK (Social and Therapeutic Horticulture).

Buy Design for Nature in Dementia Care at Amazon.com

Nominations sought for IOM Committee on Transforming End-of-Life Care

Nomination deadline: Monday, September 24, 2012

The Institute of Medicine (IOM) is searching for experts in the scientific, technical, and medical professions to be considered for a study committee titled “Committee on Transforming End-of-Life Care.”

Please provide by Monday, September 24, 2012, names of any persons you think the IOM should consider for this important task. For your convenience, you may submit your nominations directly using this link:

http://www.surveygizmo.com/s3/1024262/Suggested-Members-for-IOM-Committee-on-Transforming-End-of-Life-Care

For more information contact Bradley Eckert, E-mail:beckert@nas.edu

About the IOM Committee on Transforming End-of-Life Care

The overall objective of the project is to advance policies to improve the care that individuals and families receive at the end of life through alignment with individual values and preferences and to stimulate a national conversation with individuals, families, and communities on improving the way we approach death. Specifically, the IOM committee will: review progress since the landmark 1997 IOM report Approaching Death: Improving Care at the End of Life, assess challenges and opportunities, and examine ways to integrate end-of-life care into a patient- and family-centered, team-based framework of health and community care; make recommendations about changes in public policy, health care financing, and clinical care to better align care with individual values and preferences and promote compassionate, high-quality, and cost-effective care at the end of life; and develop a communication strategy for promoting public information and engagement.

Experts in the fields of medicine, nursing, pharmacy, social work, health care administration, pastoral care and other healthcare fields; health care finance; palliative and end-of-life care research; communication and media; patient advocacy and community-based support and care giving; health law and biomedical ethics; public policy; and health education are needed for the committee.

The overall objective of the project is to advance policies to improve the care that individuals and families receive at the end of life through alignment with individual values and preferences and to stimulate a national conversation with individuals, families, and communities on improving the way we approach death. Specifically, the IOM committee will:

1. Review progress since the 1997 report, assess challenges and opportunities, and evaluate strategies to integrate end-of-life care into a person-centered, team-based framework. Demographic and cultural changes will be considered as will advances in technology that affect the provision of care in different settings, most notably in the home. Families are increasingly recognized as a vital component of the healthcare “workforce,” and the financial and other ramifications for individual families and society will be considered.
2. Develop recommendations for changes in policy, financing and clinical care that will align care with individual values and preferences and promote high-quality, cost-effective care.
3. Design a dissemination and communication strategy to promote public engagement and understanding. A prerequisite for progress is public understanding of the realities facing individuals and families at the end of life and the availability and consequences of different choices. This strategy will need to consider the fears and anxieties surrounding aging and death and cultural diversity in values and preferences.

The Beauty of a Slow Death: A powerful book about living by Michele DeMeo

The Beauty of a Slow Death is a powerful book about the importance of living each day to the fullest. The author is Michele DeMeo, a 37-year old woman who is dying of ALS and is now receiving hospice care. Her life-affirming theme is that "Regardless of our own stories and limitations, we can choose to create a life that's truly worth living, even if our days are limited." For me, Michele embodies the principle that "when handed a lemon, make lemonade." The book will be of value to anyone, sick or well, who wants to live in a more mindful way.

Michele DeMeo is one of the most remarkable authors I've ever encountered. One day, I received a phone call to Growth House from a woman with a clear but labored voice asking to speak with someone about getting a book published. I am used to getting calls like that, but something was different about this one. The caller had to pause to catch her breath often, and her sentences were short, matching her lung capacity. I'm used to dealing with elephants in the room, so I stated the obvious, remarking "You seem to have difficulty breathing." She confirmed that was so, an effect of advanced ALS. Undaunted by her physical limitations, she was launching what was, for her, a perfectly logical project: write a book. Prior to her diagnosis, Michele worked as a highly-skilled healthcare professional, and had written for healthcare publications.

My instincts told me that one way or another she would get the book done. The result is an uplifting, simple, and transparent statement of how awareness of death can bring intensity and urgency to each moment of life. I would trade this short and intensely honest narrative for a carton of generic positive thinking books (and I have cartons of them that have been sent to Growth House by earnest authors).

The book is not a memoir or blow-by-blow description of life in hospice care. It opens with a brief review of the onset of symptoms that finally resulted in a meeting with her doctor to receive a terminal diagnosis. As she headed home from that tough session, she realized that she "had to really start living. I didn't have time to waste."

The meat of the book deals with the question, "How do you learn to live, really live, when you thought you already were?" Michelle challenges us to rethink the very meaning of "dying" within the context of our own lives. Michele challenges all of us to wake up and smell the roses while we still can. She writes:

Imagine the possibilities that would unfold if we all started looking at the world a bit differently, seeing it as an endless pot of opportunities. Committing ourselves to looking wide and broad, thinking big, loving openly and honestly, being brave, and leaving a lasting impression -- regardless of how many years or decades we are here -- would be one of our greatest gifts.

She shares her own insights while recognizing that, "(e)ach of us will likely follow a different path in this process, although many of our steps will be similar." For her, keys to rebooting her daily life included things like being more honest with herself and others, consciously seeing everything and everyone around her in a new way, learning to be more patient, and setting new goals. Putting the past into perspective, as well as letting go of old resentments, is an important part of the process. Above all, she is "freeing myself to be me". She writes:

The weight of routine and everyday burdens and obligations naturally fell away. I began to see the shape of my authentic self being reflected in the mirror. And I liked what I saw.

Diseases like ALS involve a progressive loss of function that can require a long period of demanding caregiving that affects family relationships profoundly. That is true for Michele, who describes herself as "a 37-year-old gay autistic woman with a terminal illness." One of the joys of the book is the loving and supportive bond that she has with her partner, Johann Becker, who is a registered nurse. The book concludes with an Afterword by Johann, entitled "Beauty is in the Eye of the Beholder: A Caregiver's Perspective".

Overall, The Beauty of a Slow Death: Understanding Acceptance and Learning to Live Differently Can Lead to Peace (Volume 1) is an outstanding account of a resilient response to facing death. (The book's subtitle refers to it as "volume 1", reflecting the author's hopeful attitude.)

Winners Announced for the Ensuring Safe Transitions from Hospital to Home Challenge

The Office of the National Coordinator for Health IT (ONC), in conjunction with the Partnership for Patients initiative of the Department of Health & Human Services, has announced the winners of the Ensuring Safe Transitions from Hospital to Home Challenge. Developers were asked to come up with a mobile app that would empower patients and reduce preventable hospital readmissions.

All of the entries were evaluated by a technical review panel of subject matter experts. I am proud to have served on the judging panel for the challenge. The winners were awarded prizes of $25,000, $10,000, and $5,000, for finishing first, second, and third respectively. The three top-scoring entries all showed very sophisticated solutions spanning a range of both patient needs and care provider issues. The three winners are:

• First place: The Axial Care Transition Suite (www.axialexchange.com) is a web-based application that bridges care-transition gaps across the entire care delivery chain, from first-responders and hospitals on through to providers and patients at the time of discharge.
• Second place: The iBlueButton application (www.humetrix.com) provides patients, caregivers and providers with access to personal health information at home and at their points of care. It includes mobile apps (for patient mobile phones and provider tablet computers) for access to online health records and allows patients to easily "push" records from their device to their provider's tablet or computer.
• Third place: VoIDSPAN (www.Flexis.net/readmission), integrates voice, SMS, and a web-based service into a mobile application designed to improve care for patients with a high risk of relapse by engaging them in their care together with providers, case managers, and caretakers. VoIDSPAN uses structured inpatient and outpatient data and data from local EMRs and health information exchanges, and integrates with available community resources.

Congratulations are in order for all of the teams that entered, even if they did not win. The range of solutions was impressive. There were several teams that I personally would have given an Honorable Mention.

The public developer challenge was part of the ONC Investing in Innovation (i2) program. The goal was to find innovative approaches to improving patient safety and facilitating care transitions for patients who are being discharged from hospitals to their next care setting, which might be their home, long-term care facility, hospice, or other supportive environment. About one in five patients who are discharged from a hospital will be readmitted within 30 days. Many of these readmissions are preventable through improved care coordination, which depends on improved communication between multiple care providers, caregivers, and the patient. The applications competing in this challenge all found novel ways to integrate information from multiple sources in a seamless way to try to reduce the need for returning to the hospital. The discharge checklist provided by the Centers for Medicare & Medicaid Services (downloadale at www.Medicare.gov/publications/pubs/pdf/11376.pdf ) was one of the tools the challenge hopes to make more widely used.

For general discussion of some of the technical issues related to care transitions technology, without commenting on any of the specific entries see my previous series:

Part 1: The ONC Care Transitions Tech Challenge: Thoughts from a Judge

Part 2: My Rant on Patient Education

Part 3: For Mobile Apps, Size Does Matter

Part 4: Telephony: Yesterday's Technology Today!

Telephony: Yesterday's Technology Today!

This is the fourth of a series of blog pieces I am doing to sum up my experience as a judge for the Ensuring Safe Transitions from Hospital to Home Challenge. Developers were asked to come up with a mobile app that would empower patients and reduce preventable hospital readmissions. Each of my blog pieces will look at one or two design issues that were not explicitly covered in the evaluation materials, but which struck me as important.

Don't underestimate the power of a phone call

One of the judging criteria was "Demonstrate creative and innovative uses of mobile technologies", but few of the apps seemed to remember that smartphones can be used to make and receive telephone calls in addition to their many other features. Of the 29 applications reviewed, only a handful made good use of telephony as part of the care transitions improvement suite. The most sophisticated telephony solutions were from legacy vendors of call management software. Interactive Voice Response (IVR) is a mature technology that we all are familiar with, so it was a little surprising that more vendors did not think to deploy it as part of their solution mix. Of course we all have horror stories of bad implementations of IVR, so you need to be sure it works well before you roll it out.

Some of the apps used computerized outbound robocalling to collect monitoring data ("Say or type your weight."). Since my pet peeve is inadequate pain management, I consider regular monitoring of pain levels to be part of collecting vital signs, but none of the apps seemed aware of pain managment as an important post-hospital goal. Beyond simple data collection, IVR can be used to help increase adherence to medication plans, reinforce exercise programs, or give an extra boost to whatever protocol a patient needs to stay out of the hospital. An IVR can be coupled with a real-time risk assessment algorithm that watches for red flags as the datastream comes it. If today you report that your blood pressure is out of range you could immediately be told "Your blood pressure is a little high. Let me connect you with a nurse to check on how you are doing." The call center software could then roll the caller over to a live person for an immediate second-level review.

Including telephony services as part of the app package is also important from the point of view of reducing disparities in medical care. In the U.S., people with below-average-incomes end up holding the short end of the stick on most measures of primary care access, coordination, and doctor-patient relationships. A lack of health insurance intensified the disparities, with uninsured adults often forgoing needed care. But even with insurance coverage, below-average-income Americans under the age of 65 are still more likely to report access problems and delays than insured, above-average-income adults. [Learn more: The Commonwealth Fund: The U.S. Health Care Divide: Disparities in Primary Care Experiences by Income]

One recent market research report predicts that about 65 percent of the U.S. population, or over 200 million people, will have a smartphone and/or tablet in 2015. The headline on that report could just as easily have said that by 2015, about 35% of the U.S. population will still not have a smartphone or tablet. We can't afford to have a digital divide in the quality of care transitions. Not everyone can afford a tablet computer, but almost everyone has access to a telephone. People at lower income levels, and those with lower levels of tech literacy, can be reached via telephony services more consistently than with any other contact method. Similarly, since the availability of smartphones is greater than for tablets, the smartphone form factor should be prioritized about tablets if you want to minimize disparities in availability of your app.

Dialing for dollars

Call centers do cost money, however. They require a centralized database, good phone systems, and (ideally) 24x7 staffing. But the traditional centralized model of high-cost call centers is being challenged by cloud-based, distributed labor pools that use web-based management software to enable customer support from a widely-dispersed labor force. (One example of a vendor in this category is Zendesk Voice.) This is an emerging third-party business opportunity for telephony vendors that can service multiple healthcare systems.

When you add the expense of a telephony layer to your app you need to revisit the question of who makes money when hospital readmissions are avoided. Who benefits when somebody does not go to the hospital? This is an important part of the economic puzzle. Unless a hospital can show that by preventing a readmission they will reduce costs that will offset the cost of a call center, there is no economic motivation to provide the service. On the other hand, if the service can be developed on a subscription basis or pay-as-you-go model, the incremental cost and effort needed to set up a call center can be absorbed by some other player in the system who can be compensated on a pay-for-performance model. Pay-for-performance will lead to increasing need for these types of highly-efficient cost-minimization services.

Coming Next: And the winner is...

Also see: Part 1: The ONC Care Transitions Tech Challenge: Thoughts from a Judge

Also see: Part 2: My Rant on Patient Education

Also see: Part 3: For Mobile Apps, Size Does Matter

For Mobile Apps, Size Does Matter

This is the third of a series of blog pieces I am doing to sum up my experience as a judge for the Ensuring Safe Transitions from Hospital to Home Challenge. Developers were asked to come up with a mobile app that would empower patients and reduce preventable hospital readmissions. Each of my blog pieces will look at one or two design issues that were not explicitly covered in the evaluation materials, but which struck me as important.

It was a mobile challenge, folks.

One of the judging criteria was "Demonstrate creative and innovative uses of mobile technologies", but many of the apps made no use of mobile technology at all. I guess those developers felt that if they had an existing system that ran well on a desktop computer or terminal it was worth a shot to just submit the entry and hope no one noticed that it would miss the mark on this dimension. In fact, in looking at all 29 applications side by side I noticed that many of the apps fell into two contrasting design categories:

1. "Big system trying to scale down". There are several mature discharge planning systems out there that were built to run in hospital settings. These systems are well-integrated with other hospital data systems and assume that the user is a nurse or other care provider who is sitting at a desk in a medical facility. Unfortunately for those developers, that was not the type of user the challenge was trying to target. But can't you just run your fancy hospital app on a tablet? Wouldn't that meet the criteria? Sorry, but no.
2. "Little app trying to scale up". These teams obviously designed first on a mobile device, and sometimes showed good grasp of mobile design principles. But some seemed unaware that the mobile device could communicate with a mothership somewhere. These teams never showed me where the data they were collecting was going or who would make use of it once it arrived. They failed to see that at some point in the food chain a more complex dashboard experience could add value. That dashboard probably should be designed for a larger form factor.

If you could just slap a desktop application on a smartphone or tablet and have it work well, we would all be clamoring for Windows 7 tablets. This means that if legacy vendors want to win in this new mobile world they need to develop specialized user-focused versions of their apps that are optimized for mobile delivery. Most legacy apps do not play well on mobile devices. The reduced form factor and need for touch control mean that apps must be optimized for specific types of mobile devices. Mobile interfaces must be device-appropriate and simplified, reducing the amount of information shown at any point in time. It must be possible to access features with just one or two taps.

In some ways, the legacy vendors are at a disadvantage. They may be too set in their old design paradigms to see what is going on in the new mobile world. Companies that built strong web apps were seduced by the ample real estate of a desktop monitor. They crammed more and more features onto their displays. But deploying a web app to a mobile device is not just a matter of trimming off some pieces of the web version. That method of simply cutting a complex app down to size misses the point that on a small form factor device you must focus on what mobile users really want and how they interact with their device. To my eye, the best mobile solutions have an elegant minimalism. A Zen garden may have just a few rocks arranged in a mindful way, but the visual effect can be compelling.

How people work on their device is also affected by size. Desktop users can easily multitask between complex interfaces. Smartphone users are often more transaction-oriented. The tablet users are often seeing a more immersive entertainment experience. Does your app run on the Kindle Fire, by the way?

Mobile users have come to expect apps to be location-aware, but the apps seemed location-unaware. None demonstrated use of GPS to show me a list of support services near my current position. If quitting smoking is part of my treatment plan for COPD, why can't I use my GPS to find the nearest smoking cessation resources? If I need to lose weight as part of my diabetes control plan, can the app help me find a nearby gym, or connect me with a hiking club so I can increase my social interaction at the same time I exercise? Developers, do you use Foursquare? Can you see some ways that paradigm could be integrated to support care transitions? Your goal is to help your users not be the Mayor of the local emergency room.

Last but not least, a few vendors showed specialized hardware devices that were intended for use as home-monitoring devices. This is an interesting category of equipment, but doesn't fall into the mobile category we were asked to evaluate. But they did jog my thinking a bit. If you are a hardware vendor who is still trying to sell a set-top device to put on mom's kitchen counter, consider redesigning your offering to run on a tablet. Just do it. Get over the idea that someone is going to buy a dedicated device that looks like a toaster. On the other hand, why did no one show me how their mobile app could directly pick up weight data from a scale or blood pressure cuff? Is this coming?

Coming Next: Part 4: Telephony: Yesterday's Technology Today!

Also see: Part 1: The ONC Care Transitions Tech Challenge: Thoughts from a Judge

Also see: Part 2: My rant on patient education

My rant on patient education

This is the second of a series of blog pieces I will do to sum up my experience as a judge for the Ensuring Safe Transitions from Hospital to Home Challenge. Developers were asked to come up with a mobile app that would empower patients and reduce preventable hospital readmissions. Each of my blog pieces will look at one or two design issues that were not explicitly covered in the evaluation materials, but which struck me as important.

Education is not enough

Quite a few of the apps included some form of patient education in their design. I think patient education is a good thing, so I was pleased to see that many included the feature. But some of the teams botched the job badly. I doubt that some of the developers ever tried to consume any of the education content on their own devices. The majority of the education features were text-based, using presentation methods that were state of the art in the late 1990s. Some seemed to be trying to replicate a handout on a sheet of paper. For that, I need a tablet computer? Others included various web links that took me to health education available on the Internet. There is a place for that, but seriously folks, is Wikipedia the best health education source you can think of?

In contrast to those close-but-no-cigar solutions, the best of the apps made good use of well-produced videos to explain health conditions on demand. Some had video tutorials to train the patient in self-care tasks, or show how to take complex medications. The state of the art in on-demand education is short video segments that are easy to absorb, targeted at the right level of health literacy, and well-segmented so you can take them in small doses as needed. Some of the apps showed features that allowed the user to adapt their education content to their preferred literacy level. Several of the apps indicated that they could accomodate insertion of video content provided by a healthcare system or other third party. But wouldn't it be nice if there were a central source for high-quality, peer-reviewed education videos that can be streamed to devices for applications of this type? What we really need is a sort of Netflix for health education videos. That looks like a business opportunity for somebody out there.

Some of the applications were so gung-ho on patient education they seemed to think that just giving more and better information would somehow reduce hospital readmissions. Good luck. Simply giving more information is not going to reduce readmissions. If that were true, all you would need to do is send the patient home with more discharge paperwork.

The problem is that information does not equal understanding. And even understanding something does not guarantee compliance with a care regimen. The education focus needs to shift from quantity to quality, with an emphasis on immediate relevance and positive reinforcement of behavioral change. What is delivered needs to be adjusted based on how the patient or User understands the situation they are in. Since some of the education is targeted at changing behavior patterns, maybe the app designers should look at some of the models available for consumer health support such as weight loss or quitting smoking for design ideas. For example, a friend of mine is currently quitting smoking. Good for him! He has known for years that smoking is bad for him, so his decision to finally quit was not just a matter of information. Now that he is acting on what he knows, he also needs moral support and encouragement to help him continue with a difficult behavioral change and physical addiction to nicotine.

The apps must be good at delivering "Just in Time" education when it is really needed and when there is a teachable moment. For that purpose, less is often more. To push the envelope just a bit, visualize Siri running on top of a large database of paragraph-length education segments, many of them attached to videos that are perhaps one or two minutes in length. Tell the device "Oops, I forgot to take my morning pills. What should I do?" Does the system know what your morning pills were, and what you should do if you forgot them? Here we cross over into the realm of intelligent systems that can determine what you need to know when you need to know it.

Only two or three out of the batch of 29 apps showed any awareness that not all patients are fluent in English. I live in California, and out here on the left coast 42% of the population sometimes speaks a language other than English when at home. [You can look up the stats for your own state via the Census Bureau.] That's twice the national average, which is 20%. Only one of the apps gave any details on their design that mentioned if they were capable of internationalization (sometimes called "language skinning"). Internationalization is a specific type of coding approach that enables a user to specify a preferred language as part of their settings. Since those for whom English is a second language are often among the medically-underserved, their exclusion from the education features was a disappointment. Some vendors, on the other hand, specialized in multilingual health content, but did not have as much focus on improving care transitions specifically. Maybe some of these teams should consider collaborating with one another to combine their respective strengths.

As I dicussed in my previous post in this series, the User of the app may actually be a concerned family member or caregiver rather than the patient. But none of the apps included demos of video education that was designed to meet the needs of a caregiver, such as how to take someone else's blood pressure or design meal plans that avoid salt. None of the apps mentioned training on how to do Advance Care Planning. And, of course, none of the demos ever suggested that the healthcare team might benefit from training in care transitions issues. Some of the apps had dashboards intended for use by discharge planners and care managers. Why not include some training videos on care transitions designed specifically for them? For a great series of short videos explaining the ins and outs of care transitions for healthcare professionals see the series provided by the Center for Elder Care and Advanced Illness.

I wish I could get all of the teams to go back to their whiteboards and create education features built around the following four use cases. Each case pushes the scope of the education problem in a different way. In each case, ask yourself who is the user, what does the user need to know, and how can I best deliver that information to the user? These cases are not based on real people. Education designers, start your engines!

1. Your patient is Mae, a Chinese-speaking 79-year old woman who is currently in the hospital with her second admission in the past year for complications related to congestive heart failure (CHF) and chronic obstructive pulmonary disorder (COPD) exacerbated by continued smoking. She is expected to be stabilized and released within a day or so. Mae lives with her daughter, Julie, who is computer-literate and has a tablet computer, an iPhone, a home computer, and a home telephone (which her mother uses often). Julie's mother can speak English but is more fluent in Cantonese, which is what she speaks at home. Julie's mother generally receives care from her private physician, who accepts Medicare, and one hospital where her physician is affiliated. There is a Chinese-speaking case manager in the hospital who is familiar with the family situation. Once Mae is released she will need to check her weight each morning to see if she is retaining water. She is taking several medications related to her condition. Julie must travel often for her job, and when she is on the road she arranges for a Cantonese-speaking volunteer from a local community center to visit her mother once a day.
2. Your patient is Ed, a 37-year old heroin addict who is HIV+. Ed does not have a regular physician but has been in and out of the ER four times in the past year for relatively minor health issues. He knows that he is supposed to take antiviral medications regularly but sometimes skips them. He gets his antiviral meds from a community health center where he is well-known and considered a "reliable regular". He has a cell phone but does not have a home computer. He is on Medicaid and SSI. He lives with his girlfriend, who is also addicted to heroin.
3. Your patient is Susan, a 53-year old woman who is seriously overweight. She has been gaining weight steadily for the past several years, and her lack of success with dieting has contributed to her current depression. Recently she was diagnosed with diabetes after having been admitted to the hospital after a minor heart attack from which she recovered well. She lives alone and has a very limited social circle. She has a home computer and an Android phone. She takes insulin as well as oral diabetes medications. She has private health insurance through her employer and receives healthcare through a managed care system. She often complains that she never sees the same physician twice in a row.
4. Your care provider is Ted, a 37-year old nurse who has recently been assigned as a discharge planner and discharge followup specialist in a rural hospital. Ted is new to discharge planning but wants to make a positive impact on the lives of his patients. He has been given a tablet computer for use with other hospital data collection applications and can access your care transitions application on the same device via a web connection. Some of the patients he is discharging may need special help to ensure they can stay at home. How can we help Ted understand the different types of home care needs that patients with different conditions will require? How can we help him facilitate support arrangements with community-based agencies in his town that could help his patients? Ted is addicted to his Android phone when not at work.

Next: Part 3: For mobile apps, size does matter

Previous: Part 1: The ONC Care Transitions Tech Challenge: Thoughts from a Judge

The ONC Care Transitions Tech Challenge: Thoughts from a Judge

Whew! I just finished reviewing 29 web-based and mobile applications designed to improve care transitions and reduce preventable hospital readmissions. This is the first of several blog pieces I will do to sum up my experience as a judge for the Ensuring Safe Transitions from Hospital to Home Challenge. It would have been fun to do this like Top Chef or Dancing With The Stars, booting one of the contestants off each week, with escalating drama. But this contest required that all of the apps be examined side-by-side in one evaluation round.

The contest is sponsored by the Office of the National Coordinator for Health Information Technology (ONC), in collaboration with the Partnership for Patients. Software developers were challenged to improve care transitions by creating an intuitive and easy-to-use application to empower patients and caregivers that fits into existing ways that providers communicate. The winner gets $25,000 plus tons of publicity for their app.

In looking at so many technical solutions as a group, I noticed some meta-issues about requirements, design, and business models that were not directly included in any of the challenge documentation. Some of these issues may be important to future design projects, so I will document them while they are fresh in my mind. I will look at some of the specific entries in more detail, but I will hold off on that until the winning team is notified on Wednesday, November 30, 2011. My comments will cover general architectural issues and design issues, and will not disclose any of the details that may be subject to embargo. In each post I will try to cover one or two of the thematic issues I want to cover.

First off, here are the judging criteria:

1. Integrates design and usability concepts to drive patient adoption and engagement: Is the app user-friendly? Intuitive and easy to grasp? Interactive? Does the interface increase the app's efficacy? (weighted 25%)
2. Demonstrates creative and innovative uses of mobile technology: How new or innovative is this solution? Are there similar apps or products already in the marketplace that address this health problem in a similar way? Does the technical implementation of the solution meet the technical standards as laid out in challenge? (weighted 15%)
3. Demonstrate potential to improve health status for individuals and/or the community: How likely is it for patients and their families/caregivers to use the app to manage their health? Does the app promise to reduce hospital readmissions? Is the solution capable of changing the way patients and providers communicate and interact? Will it increase informed decision-making? (weighted 25%)
4. Effectively integrates inpatient and outpatient data and provides structured support for self-care: How well does the application access available data sources? How well does the application provide support for discharge? (weighted 25%)
5. Leverages NwHIN standards: Are NwHIN standards in content, vocabulary and transport included? (weighted 10%)

Who are the at-risk patients?

The first big issue I noticed with the submissions was that not all of the entries had a clear idea about who the high-risk patients are. Since this is the main focus of attention for this challenge it was surprising that so few of the entries were clear on the concept. Many of the apps seemed designed for yuppies who need surgery on runner's knees or problems with tennis elbow. I could see bright, self-empowered overachievers using the apps on their tablet computers while enjoying a soy latte at the nearest coffeeshop. Unfortunately for those developers, this is not where the problem lies.

While all patients deserve good discharge planning and followup services, a key to reducing preventable re-hospitalizations is to understand risk stratification. Only a few of the apps seemed to have a clue that risk stratification is the key to allocation of institutional support resources, which are expensive and limited in supply. Can we identify earlier on those patients who are most at risk for re-hospitalization and ensure they get the treatment they need? This is a really important issue for healthcare systems. If you are good at statistics and want to win a $3,000,000 prize, consider entering the Heritage Provider Network Health Prize competition. That contest is trying to come up with an algorithm to identify patients who will be admitted to a hospital within the next year, using historical claims data.

We can make some general observations about groups that are most at-risk for rehospitalization. Two major groups jump out from the rest. First off, elderly folks with multiple chronic conditions, requiring lots of different medications, who are having problems with mobility and self-care, particularly if they live alone. Failing vision may make reading and even paying bills difficult, let alone reading discharge instructions. Second, anyone with a serious, chronic mental health problem such as major depression or delusions, or serious addictions may be having problems handling day-to-day challenges of life. If you can barely keep it together on a good day, imagine how tough it is when you get sick. The third category includes anyone who has already shown a pattern of recycling back into the hospital system. This might include anyone who has been in the hospital twice in six months or in the ER a few times in a the past year. Unless these incidents were clearly due to special situations or accidents, there may be a high risk of continuing that pattern. [Learn more about tough customers for care transitions: Tough Customers - Who need care transitions most]

Who is the User of the app?

Many of the apps assumed that the patient would be the User. That is consistent with a key idea behind the challenge, which was to use technology to empower patients and caregivers. But in addition to the patient, the trick to making an impact lies in the interface between the patient, the patient's support ecosystem, and various healthcare providers. Many of the high-risk patients have serious, chronic, and complex conditions with limited support networks. Many have low levels of health literacy and tech literacy. Often, the key to helping them stay out of the hospital will come by activating or building support services around them that can identify problems before they get out of hand. Support is likely to come from one of three sources, so I looked at whether or not the apps seemed aware of these potential user groups, in addition to the patient:

1. The hospital discharge planners and case managers, plus other direct care providers, can provide monitoring, data collection, and followup services to keep track of what is going on. Based on monitoring data they may activate supportive services to reduce the need for an expensive rehospitalization. These services cost money, so they must be allocated to those who need them the most. The theory is that spending money on lower-cost interventions reduces overall costs by keep someone out of the hospital. This goes back to the issue of risk stratification. Did the app have some sort of dashboard for use by care providers, or integration with existing hospital and medical record systems? Was there some way the app could faciliate decisions on allocation of scarce intervention services by care managers?
2. The extended circle of care hopefully will include family and friends who can be caregivers. Did the app help form and support these circles of care? Several of the apps were driven primarily by this model, and tried to create a sort of Facebook for sick folks. This is not a new idea, and can be an important component of a solution, but by itself it is not enough to make a real dent in the institutional reality of care delivery. Only a couple of the apps ran with the idea that the most likely user would be the daughter, son, or caring friend, and explicitly showed how having a tablet in hand when talking with a healthcare provider could be a game-changer for a determined caregiver.
3. Community-based agencies such as senior daycare centers, meal programs, and other supportive agencies can play a key role in monitoring changes in health for vulnerable groups. Was there some way these resources could be part of the support mix for a client? Not one of the apps showed me how a Meals on Wheels volunteer who had been authorized to do so could carry a tablet around like a FedEx delivery person, helping to spot possible problems based on regular service interactions. When you put the meal in the fridge, do you notice that nothing has been eaten for days? None of the apps took me to the lobby of the Senior Center where mom spends afternoons.

What is the business model?

Depending on your views about the two issues of who the patient is and who the User of the app is likely to be, two major categories of business model emerge:

1. If you think the customer is a healthcare system, you will design something that feeds off the hospital Electronic Health Record (EHR) and has strong integration with healthcare data exchange standards. You hope the institutional customer will pay big bucks for a system that they can install on their own data center floor, or use via your cloud service. Cost justification will need to show provable net reductions of operating expense (a cost minimization model).
2. If you think the customer is the patient, you will design something that has a low price, or even a free app that is supported by advertising or branding by a healthcare provider. You may charge a fee to healthcare systems that want to utilize a provider interface, but the design paradigm will largely be driven by consumer needs, following a Personal Health Record (PHR) model.

Coming Next: My rant about patient education

Tech challenge seeks to improve care transitions

A technology challenge is looking for innovative ways to improve the quality of care transitions, reduce preventable hospital readmissions, and improve patient safety. Tech challenges are a popular tool in the technology community to encourage innovative development among software developers. In this case, the first prize is $25,000 (plus tons of free publicity) for the winning developer. Software developers have until November 16, 2011, to sign up for the challenge. I am one of the judges for the competition, and I hope we will have lots of useful applications to evaluate. For full details, visit the competition website, ”Ensuring Safer Transitions from Hospital to Home Challenge”, at http://www.health2challenge.org/2011/06/24/care-transitions/.

This tech challenge is sponsored by the Office of the National Coordinator for Health Information Technology (ONC-HIT) in collaboration with the Partnership for Patients. The Partnership for Patients is a new nationwide public-private partnership launched by Secretary of Health and Human Services Kathleen Sebelius to tackle all forms of harm to patients. Its aims include a 20% reduction in readmissions over a three year period and a 40% reduction in preventable hospital-acquired conditions.

Nearly one in five patients discharged from a hospital will be readmitted within 30 days. A large proportion of readmissions can be prevented by improving communications and coordinating care before and after discharge. The Centers for Medicare and Medicaid Services (CMS) provides a discharge checklist to help patients and their caregivers prepare to leave a hospital, nursing home, or other care setting. Research has shown that empowering patients and caregivers with information and tools to manage the next steps in their care more confidently is a very effective way to reduce errors, decrease complications, and prevent a return visit to the hospital.

The ideal application for this tech challenge will:

• Incorporate the content of the CMS Discharge Checklist
• Help patients and caregivers access the information and materials needed to answer the checklist’s questions about their condition, their medications and medical equipment, and their post-discharge plans
• Share this information with doctors, pharmacists, nurses and other professionals in their next care setting (e.g., home, nursing home, hospice)
• Identify community-based organizations or others who can provide valuable assistance
• Leverage and extend NwHIN standards and services including, but not limited to, transport (Direct, web services), content (Transitions of Care, CCD/CCR), and standardized vocabularies

Administration on Aging Care Transitions Toolkit

The Administration on Aging has released a very useful Care Transitions Toolkit to help healthcare organizations improve the quality of care transitions for senior patients. The Toolkit is in the form of a series of free PDF files that explain various issues that affect care transitions quality. You can download "The Aging Network and Care Transitions: Preparing your Organization Toolkit", at http://www.aoa.gov/AoARoot/AoA_Programs/HCLTC/ADRC_CareTransitions/Toolkit/index.aspx.

Developed for States, Area Agencies on Aging, Aging and Disability Resource Centers, Tribal Organizations, and other local service providers within the National Aging Network, the Administration on Aging Care Transitions Toolkit is targeted to organizations that are interested in learning more about how to prepare their organization for a role in care transitions programs. Whether your organization has historically developed partnerships with health care providers or programs that span the continuum of care such as Community Living, Money Follows the Person, Aging and Disability Resource Centers, or others, the tools and resources here can assist in formalizing your efforts for future funding and program opportunities.

This toolkit includes lessons learned from States that received funding from the Aging and Disability Resource Center (ADRC) Program, ADRC Evidence-Based Care Transitions Program, Person-Centered Hospital Discharge Model, Community Living Program (CLP), and the Veteran Directed Home and Community Based Services (VD-HCBS) Program.

To find other helpful resources for improving the quality of care transitions, use the Care Transitions Search Widget, developed by Growth House specifically to locate high-quality content related to care transitions and reducing hospital readmissions.