A Balancing Act - Tackling Teen Obesity and Depression

By Katherine Kim, San Francisco State University, iN Touch Principal Investigator.

Our project is in full swing and that means we are increasingly clear about the promise that lies ahead if we are successful. As often happens, the more we talk about the project, the more we find others working on similar issues.

Last week, I met Professor Karl-Walter Kohlmann, a German health psychologist who was visiting San Francisco State.  He kindly sent me two recent papers from his research group. The first paper highlighted the high rates of anxiety and depression among children and teens who are overweight or obese. The other paper showed a difference in negative coping strategies (overeating, social isolation, computer and television use, etc.) used by children who saw themselves as overweight/obese vs. those who saw themselves as not (even if their BMI was in the overweight/obese range). It heightened my awareness of how thoughtfully and carefully we must interact with youth in our project so as not to perpetuate the problem by over-identifying them with a clinical label.  We want to protect their identity and esteem while we help them realistically change their health behavior. 

The paper recommended that treatment components for youth include nutrition, physical activity and behavioral skills (e.g. stress management, self-regulation and evaluation skills, and social support). I think we are on the right track with iN Touch by helping the patient manage activities related to all three components. I do have a question though. Might the use of the iPhone/iPod Touch increase the positive social integration of our population of teens by giving them another means of communication and another supportive person to engage with, the health coach?  Or, will the device end up like the TV and computer, an enabler of sedentariness and isolation. 

I’d love to hear what you think.

WHAT'S IN IT FOR THE DOCTORS? And for everyone else on the care team!

By Patricia Flatley Brennan.

A comment on my last post, Is it really so easy to bring ODLs into the clinical workflow?, asked us to address the “What's in it for me" question doctors will inevitably be asking. I am surely unqualified (but no less reluctant!) to discuss what value ODLs in PHRs hold for doctors. I invite all physicians reading this to weigh in.

ODLs: Calls to action
However, let's step back a little to bring both ODLs and a patient's clinical care team into better focus. ODLs, observations in daily living, are the cues people use to let them know how they are doing. ODLs may be behaviors, thoughts, feelings, actions, even environmental indicators like pollen levels and humidity. The issue is more about what stimulates people to take, or not take, health action. Some ODLs map directly to underlying physiology (e.g. a damp and smelly t-shirt results from sweat produced during exercise and may signal that the effort was worthy) or provide hints of related processes (indigestion may signal marital discord). Each of these may be a call to action for the person, and it is likely that such calls to action may also be informative to the clinician.

ODLs: Useful to various care team members
In most encounters with the health care system, contemporary patients "see" many clinicians, even in solo physician practice there may be a medical assistant, health educator, nurse, etc.  I suspect that ODLs may be more or less relevant to the practitioner depending on the purpose of the visit and the reason that the ODLs are discussed.  ODLs may be most relevant to case managers, community workers, family practitioners and pharmacists. We saw this play out in the most recent design workshop involving the five Project HealthDesign grantee teams where the involved clinicians included social workers, nurse practitioners, and community outreach specialists, in addition to physicians.

ODLs: Inform therapies
Finally, ODLs hold the clues to interpreting the outcomes of therapeutics that even physicians need.  Certainly a physician, discovering that what drives a patient to action is in fact misleading, will take the time to clarify the misconception and coach the person towards more appropriate responses. ODLs might help explain why prescribed therapies are not working, as in a patient who skips an anti-hypertensive because they have wrongly determined that the frequency of urinating indicated a problem with the medication rather than an expected consequence. By shedding light on everyday health experiences, ODLs might be just the thing to ensure that prescribed therapies are followed.

Is it really so easy to bring ODLs into the clinical workflow?

By Patricia Flatley Brennan.

We applaud the interest by large hospitals and medical practices to capture observations in daily living and integrate them into the clinical record. This kind of welcoming vision reaffirms the direction that we are taking as our five grantees partner with people with complex medical problems to identify ODLs that help them determine how they are doing, and then work to figure out where such observations enhance the clinical care process and contribute to better outcomes.

The technical advances now make it possible to turn our attention to the clinical, human factors and regulatory dimensions of the challenge of integrating patient self tracking into meaningful clinical care. These questions include:

1. How can we minimize patient burden but capture ODLs in enough detail to make them really useful?
2. What is the relationship between selected ODLs and the underlying physiological state of the patient? (That is, do ODLs give early insights into clinical state, or do they complement what traditional signs and symptoms tell us about how a patient is doing?)
3. Can we develop methods to interpret and feed back to the patient information about the ODLs that help them take meaningful health action?
4. What logistical problems must be solved to permit direct entry of ODLs into the clinical record (e.g. authentication, non-repudiation, secure transfer, efficient data storage and presentation)?
5. Which clinician is the right one to receive and interpret the ODLs?
6. How do we insure the proper regulatory protection for taking clinical action based on ODLs?

We expect to make significant progress towards answering these questions in Project HealthDesign as the design teams and their clinical partners will illuminate the real world experiences and challenges inherent in using ODLs. We're also looking forward to the regulatory analysis and guidance provided by Manatt and CDT to highlight where state and federal laws and regulations support (or inhibit) the use of ODLs in clinical practice.

We welcome any and all partners on the journey with Project HealthDesign! Join our forum discussion, tell us your experiences, share your solutions -- it will take lots of work in lots of fields to bring every day living into health, and health into every day living!

If you build it, will they come?

By Barbara L. Massoudi, RTI International, BreathEasy Principal Investigator.

Why software projects often fail
You have probably heard that software development is risky business, with some 70% of projects failing in one way or another, but did you every wonder why? It turns out it’s not because the technology is super complicated or that some fancy algorithm isn’t working correctly. It’s simply that most software requirements are not well developed and captured, and often when they are, they’re based on a vision of the application that comes from the mind of the developers, not the users. So, lots of time, money, and hard work get wasted on systems that ultimately get rejected by the users.

Engaging users to develop the BreathEasy system
User-centered design is a software development philosophy and approach that puts users, rather than developers at the center of the planning, design, and testing of the application. BreathEasy researchers will work directly with our intended users – people with asthma and depression or anxiety and their clinicians to initially learn what they want from the PHR application.

• What kinds of ODLs do they feel would be most important to capture, and how could those ODLs be best captured?
• What types of challenges do the users see in interacting with the PHR on a daily basis and how can those be overcome?
• What types of feedback would they be comfortable with, or more importantly, not comfortable with receiving from the PHR?

These are just some of the topics that researchers will discuss with focus groups of 10 patients and 4-6 clinicians from the two Virginia Commonwealth University family medicine clinics in Richmond. Once this information has been gathered, the team will develop mock-ups of the application, show them to users and get their feedback. This will be the start of an iterative design and development cycle that we believe will ultimately lead to a finished application that is widely accepted by users and meets their needs.

Crohnology.MD - Visualizing Patient Narratives via ODLs in Crohn's Disease

This post is the fifth and final in a series that introduced you to our five new grantee teams.

By Nikolai Kirienko, University of California, Berkeley, Crohnology.MD Project Director.

How do you communicate the impact of a chronic illness when you look much healthier than you feel?  This question has dominated my life from the time I was 12.

It started before the summer of 7th grade, when I came down with the flu along with most of my class.  But when school began the next fall, I was still sick.  In fact, I remained ill during the fall semesters of 8th through 11th grade.  And no one, including my doctors or myself knew exactly why.

Managing Crohn's Disease
Then on December 28, 1998, during my senior year of high school, I was airlifted out of Bear Valley, CA with a full bowel obstruction. Six years of chronic inflammation from an undiagnosed case of Crohn’s disease had finally scarred my small intestine almost entirely shut. Yet, it was all very quick and unexpected as the helicopter lifted me off the mountain, leaving my family and my new snowboard behind in the middle of what had been a great powder day.
 
What my family, my doctors and I all missed were the subtle, progressive signs of steadily worsening Crohn's disease.  The destructive patterns of this illness can unfold slowly over years, often without surfacing in a single definitive blood test or the most advanced medical diagnostic image.

For 600,000 American's with Crohn's disease, many of whom are young and leading active lives, accurate communication around these subtle, every day patterns can be a vital first step towards accessing appropriate care in a timely way.

Crohnology.MD
Over the last 10 years, I've had five more surgeries, spent over 300 days in the hospital and learned to keep a detailed electronic record of my symptoms.  However, with 5,000 pages of text spanning four solid years of daily observation, I encountered an entirely new problem.  How do I make sense of all this data?  Especially when I have just 15 minutes to summarize weeks, months and years of experience with my provider in clinic!
 
Evolving from those early efforts, Crohnology.MD has emerged with the goal of making it easier for every patient with Crohn's disease to accurately select, record and share the most important health patterns from their everyday lives. By deploying connected technologies that can blend into a daily routine, such as smart phones and wireless weight scales, we hope to give patients and those who care for them more timely and actionable insight into the relationships between weight fluctuations, chronic pain, fatigue, sleepless nights, stress and of course, all those fun gastrointestinal symptoms.  
 
The Crohnology.MD Team
Crohnology.MD is a collaborative research effort between the University of California, Berkeley, the Healthy Communities Foundation and the University of California, San Francisco. At the UC Berkeley School of Public Health, Principle Investigators Deryk Van Brunt Dr.P.H. and Linda Neuhauser Dr.PH. are guiding our team with decades of experience and research in the collaborative development and evaluation of online consumer health interventions.  At UCSF, Principle Investigator Jonathan Terdiman, M.D., Director of the Crohn's and Colitis Center, and Elena Rodriguez, R.N. M.S. C-NP are working to ensure that Crohnology.MD fits well into a clinical workflow, while also improving the patient-provider relationship. Leading Crohnology.MD’s implementation and development is pioneering Continua Alliance member and systems integrator Praduman Jain and his staff at Vignet, with Paul Hamera providing design, and Marcos Athanasoulis, Dr.P.H. providing technical direction on behalf of The Healthy Communities Foundation.

We hope you'll visit our webpage for Crohnology.MD updates and follow our progress through the blog!

FitBaby - Making Record-Keeping Easy for Parents of Premature Infants

This post is the fourth in a series that will introduce you to our five new grantee teams.

By Karen Cheng, Charles Drew University, FitBaby Principal Investigator

Four years ago, Micah, the son of one of my best friends was born with a condition that kept him in the Neonatal Intensive Care Unit (NICU) for nearly 30 days. My heart bled as I stood with my friend in the NICU – her joy of having a newborn shattered by the pain of seeing her son in an incubator.

For the next year, after Micah went home, I watched my friend and her husband plug away, day after day, in their care for Micah. They carefully recorded on paper charts how much he ate, whether he threw up, whether he pooped, how long he slept, when he took his meds. And, it was only years later that my friend could identify her fluctuating emotions at the time – shock, sadness, anger, fleeting moments of acceptance – as signs of post-partum depression.

Our project, FitBaby, is designed to make those first few months out of the NICU a little easier for parents and other caregivers of premature infants.  Approximately one out of every eight babies in the US is born prematurely and many of these infants will face long-term health problems. In addition, nearly 40% of mothers of premature babies suffer post-partum depression at some point in the first year after delivery.

The FitBaby Project
FitBaby allows parents to use mobile phones to quickly and easily enter information, such as a baby’s sleeping and feeding patterns. The FitBaby system will also include sensors, placed strategically around the home, that can automatically record information such as how much the baby is moving or how much the baby weighs – without extra work on the part of parents. FitBaby can help keep many of the daily records, and parents can focus on resting and enjoying their babies. Parents, as well as pediatricians, can view summaries of the information gathered by FitBaby to enable them to identify the early signs of illness.

We are also exploring the recording of parents’ emotional well-being so that they can better understood their own emotional health and maybe even identify the early signs of post-partum depression. 

The FitBaby Team
This project is a collaborative effort among University of California, Irvine; Charles Drew University of Medicine and Science; and University of California, Irvine Medical Center. Our diverse team is working closely together to design and test the FitBaby system. As Co-PI’s Gillian Hayes and I provide overall direction for the project. Monica Tentori, Sen Hirano, Sun Young Park, and Leslie Liu are designing and developing FitBaby. And our clinical partners, Dan Cooper, Julia Rich, and Sheba George, are working with us to ensure that FitBaby assists pediatricians and improves the doctor-patient relationship.

We are very excited about our project and hope you'll visit our webpage for updates and follow our progress through the blog!

Staying iN Touch with Youth with Obesity and Depression

This post is the third in a series that will introduce you to our five new grantee teams.

By Katherine Kim, San Francisco State University, iN Touch Principal Investigator

Obesity and depression
Overweight and obese youth are suffering from chronic illnesses at younger and younger ages. The iN Touch project is reaching out to youth who are dealing with or are at risk for obesity and depression. Here at San Francisco State University’s Health Equity Institute (SF State) we believe we need to manage both of these conditions to have healthier youth. 

iN Touch
To tackle this issue we have partnered with clinicians from San Francisco General Hospital’s Teen Clinic (SFGH) to integrate smartphone technology with a health coaching model of care to help youth say in touch with their health, in touch with the factors in their environment that impact their health, and in touch with their care team. With an iPhone or an iPod Touch, San Francisco teens will be able to track observations of daily living (ODLs) such as food choices, physical activity, social networks, moods and information about the environment they live in that they feel is relevant to managing their physical and mental health. But, access to information and tracking of ODLs is only a first step. Taking action based on the information is critical. That’s where health coaching comes in.

The SFGH health coaching model centers around the patient. The primary care team includes the physician, therapist, and health coach who work together to support the patient. For example, a health assessment will be done by the physician that identifies medical issues. The health coach will then meet with the patient to help them develop an action plan—one that states the patient’s specific health goal, steps she will take to work towards that goal, and commitments around tracking, communication, and follow through. The smartphone technology supports the daily engagement with the action plan and allows the patient to interface with the health coach as often as they want. It also helps the care team identify medical and mental health issues as they arise, not waiting until the next visit which might be weeks or months away. In this way, we hope to enable an integrated and comprehensive approach to well-being that helps patients and their providers work together.

The iN Touch Team
I am the principal investigator from SF State and work with co-PI Christina Sabee from SF State’s Communications Studies Department. We are collaborating with the SFGH team which includes co-PI (and UC San Francisco faculty) Dr. Tom Bodenheimer, medical director Dr. Hali Hammer, Teen Clinic attending Dr. Aisha Mays, Department of Public Health psychiatric social worker David Guldmann, and iN Touch program manager Amireh Ghorob. We also have great research assistants: health education graduate student Ed Young and communications studies graduate students Joven Chacon and Holly Logan.

We are very excited about our project and hope you'll visit our webpage for updates and follow our progress through the blog!

Using Sensors to Track Cognitive and Physical Decline

This post is the second in a series that will introduce you to our five grantee teams.

By Anind K. Dey, Carnegie Mellon University, Principal Investigator.

Here at Carnegie Mellon University in Pittsburgh, we have been working with people with Alzheimer's Disease for a few years, focusing on how to improve their quality of life and that of their familial caregivers'. A clear source of tension was episodic memory impairment or EMI. This was true for caregivers in having to repeatedly remind their loved one about a past event, and for people with Alzheimer's Disease in losing their sense of self from not being able to remember important events from their past. Our approach to addressing EMI was to capture lifelogging information (images, audio, sensors) of events they wanted to remember, and then to apply heuristics from our fieldwork to create salient summaries, to filter the vast amounts of information being collected down to a consumable and reviewable amount. This approach improved our subjects' confidence in their own memory and their ability to recall aspects of episodic memories, and reduced the burden on caregivers.

We are very excited about this approach of creating salient summaries, and for Project HealthDesign, we believe that we can apply this approach to detecting the onset of cognitive and physical decline, before an official diagnosis of an impairment such as Alzheimer's Disease. Often such a diagnosis is delayed due to a lack of recognition of change in one's abilities, and/or the extensive time between assessments. Earlier diagnosis would permit earlier interventions, both behavioral and pharmacological. 

Our project
We are planning to deploy sensing technologies that can detect changes in the performance of everyday activities, such as medicine taking, sleeping, using the phone, and meal preparation. As our sensors detect changes in the quality of performance of these different activities (e.g., time taken to complete the activity, performing steps correctly or out of order, skipping or adding steps), our proposed system will create appropriate salient summaries to present to the person whose activities are being sensed, occupational therapists, physicians and other care providers who can offer interventions as necessary. The biggest benefits of our technological approach are that it can be used to monitor activities 24-7 and detect changes continuously and doesn’t place users into "test situations" where they behave differently because someone is observing them. An example of one of our sensor systems is shown here: a pillbox instrumented to detect which door a user has opened, what is placed inside each door, whether the pillbox is being shaken or turned upside down, etc. For the medicine taking task, and the other tasks, we are sensing all the steps that an individual takes to perform the task, in a privacy-preserving and comprehensive manner, from selecting the appropriate pills to swallowing them with water.

The project team
We've put together a great team for this project. Matthew Lee, my student, is a 5th year Ph.D. student in the Human-Computer Interaction Institute, and is focusing on the use of technology and salient summaries to improve quality of life of elders. Diane Collins is a professor in the Department of Rehabilitation Science and Technology at the University of Pittsburgh, and is also a licensed occupational therapist with over 20 years of clinical experience. Linda Kent is a licensed occupational therapist with many years of clinical experience at Presbyterian SeniorCare, a local network of living and care options for elders and people with disabilities, and a key partner in this project.

We are very excited about our project and hope you'll visit our webpage for updates and follow our progress through the blog!

BreathEasy - A PHR for Adults with Asthma and Depression or Anxiety

This post is the first in a series that will introduce you to our five grantee teams.

By Barbara L. Massoudi, RTI International, BreathEasy Principal Investigator.

Asthma, depression and anxiety
The link between asthma, depression and anxiety has stymied medical researchers for some time. Despite several studies, it’s really unclear which comes first. The mechanism for the interaction between these two conditions is also a mystery – is it behavioral, environmental, or biological? No one really knows.

Managing these conditions
What we do know is that for people with asthma, managing their condition on a daily basis can be challenging. There are several different types of medications that can be taken and avoiding triggers is an important thing to do as well. Triggers are usually things that we all commonly encounter on a daily basis such as animal dander, pollen, smoke, cold air, even physical activity. Add to all this a condition like depression or anxiety that typically makes people less energetic and less likely to be able to do things to care for themselves. The interaction of the two conditions can lead to a vicious cycle, affecting the quality of life for patients.

The BreathEasy project
This difficulty in self-management and the impact on quality of life is exactly why we decided to tackle this complicated set of conditions through our project. Researchers at RTI International, a non-profit research organization and the Virginia Commonwealth University Department of Family Medicine have teamed up to develop a PHR application to assist people with asthma and depression or anxiety. To develop the tool, we’ll work with about 35 adult patients with asthma and depression or anxiety, recruited from the patient populations served by two primary care clinics in Richmond, VA – the Nelson Clinic and the Hayes E. Willis Health Center. The PHR tool will help these patients track observations of daily living (ODLs) related to their conditions. ODLs can be things that you do everyday – such as taking a medication, or things that you feel – like shortness of breath or a sad mood, as well as objective measures of lung function like peak flows. The importance of capturing the ODLs is that they could hold the key to sorting out an individual’s personal experience with triggers, meds, and symptoms, but they don’t occur in the doctor’s office where they can easily be observed. These are things that occur out in the world, in the course of everyday life, and generally speaking, people aren’t very good at recalling things they do, even on a daily basis. The PHR tool will offer a way to capture and display this information in a way that will be informative to the patients and hopefully, clinically relevant to their health care providers.

The project team
As the principal investigator, I’m working with co-PI, Dr. Steve Rothemich from VCU as well as Dr. Alex Krist, another physician in the Department of Family Medicine. The RTI team consists of Bill Savage who will develop the patient application for the Android-based phone, Mike Zmuda, who will build the clinician dashboard, Sarah Cook, who will conduct focus groups and do usability testing with patients and clinicians to learn what features and tools they’d like the application to have, Rita Sembajwe, who will keep me on track with her project management skills, and develop a newsletter for patients, and Lucia Rojas-Smith, who will design an evaluation to measure the impact of the tool on patients, clinicians, quality of care, patient-clinician communications, etc.

We hope you'll visit our webpage for BreathEasy updates and follow our progress through the blog!

An Exciting Day

By Patricia Flatley Brennan.

Today is an exciting day for Project HealthDesign as we launch the second round of the project with five new grantees. Building on our initial success, where we created a broader vision of PHRs that meet people’s needs by using technologies that people already rely on as part of their daily lives, we are now exploring practical ways to capture and integrate patient-recorded observations of daily living (ODLs) into the clinical care process.

Using ODLs to inform care
Our premise is that ODLs can help unlock information that is typically not part of the clinical experience – but that providers and patients absolutely need to be talking about. To help us test this with real people and real providers, we have selected five outstanding grantee teams for an intensive two-year demonstration projects to test whether and how information – such as the stress levels of caregivers of premature infants and medication or cooking routines of seniors at risk of cognitive decline – can be collected, interpreted and acted upon by patients and clinicians in real-world clinical settings. 

Over the next two years, the teams will forge partnerships with actual patients and providers in their communities and share experiences about how to:

1. Identify, capture and store several types of ODLs for their target patient population;
2. Analyze and interpret ODL data to extract clinically useful information;
3. Use this information to provide feedback to patients so that they can better manage their conditions and improve their health;
4. Enable patients to share this information with their doctors, nurses and other members of their care team;
5. Present the information to clinicians in ways that they can easily integrate into their clinical work flow without adding substantial burden to clinicians; and
6. Identify and explain opportunities and challenges associated with this overall approach to policymakers and clinical leaders.

We hope you’ll join us for an incredible journey
These teams were selected in a highly competitive grant process from nearly 150 initial applications, and we are elated to have them aboard for the second round of our work. Through this blog and other channels, we will be communicating early and often to let you know what we are up to and how things are going – even in those messy times when we are still trying to figure it all out. As you watch things unfold, please consider yourself a part of our process and let us know what you think. Commenting on this blog is a great way to start.