Observing Fussy Babies and Their Fussy ODLs

 Karen Tang, Ph.D., FitBaby Post-Doctoral Researcher, University of California at Irvine

A critical component of FitBaby has been determining which observations of daily living (ODLs) to support. For infants, it’s difficult to know exactly how they’re feeling, so their ODLs tend to rely on objective metrics like weight and diaper changes (both of which we support). However, we’re also interested in capturing other infant-related ODLs, especially ones that are meaningful to parents and can serve as meaningful indicators for clinical purposes. 

Evidence from our pilot interviews suggests that caregivers often refer to “fussiness” when describing their baby’s health problems. First-time parents, in particular, often sense that something is wrong, but don’t have enough experience to know what might be causing the fussiness. In these cases, caregivers can find it overwhelming to track ODLs because they’re unsure of which behaviors they should be capturing; after all, the fussiness could be related to common problems such as food sensitivities or tiredness, or it could be indicative of something much more serious. So, fussiness is one of our ODLs. To capture how fussy a baby is, we use a scale of 0-10, where 0 means that the baby is not at all fussy. While it’s true that a self-reported fussiness measure is subjective and will likely differ among caregivers – much like pain or fatigue measures – it is the relative change in fussiness that’s important, rather than the absolute values.

The visualizations of fussiness data can help caregivers diagnose problems. Many common causes of fussiness can be linked to routines. For example, if the baby is typically fussy around the same time of day, this may suggest that the fussiness is tied to the baby’s routines (e.g., his feeding or sleep schedule), rather than a serious health problem. Our charts also allow caregivers to reflect on how long their infant has been fussy. For example, if the baby is normally fussy for only two hours each day, but is fussy for eight hours one day, then this observed increase in fussiness might indicate a health condition that's worth discussing with clinicians. Our hope is that clinicians will also find that the chart visualizations provide an easy way to interpret and understand a baby’s past fussiness behaviors or to link these behaviors to other indicators and ODLs.

It’s been exciting to see the fussiness ODL emerge out of our pilot interviews and be integrated into our application. When we’ve given demos of our app, people instantly gravitate towards the fussiness ODL as something they relate to and can easily understand. We hope our participants will also find it useful to track and share this information with their clinicians.

Watch the video below, featuring FitBaby Principal Investigator Gillian Hayes, to learn more about our Fussy-o-meter:

Using Cell Phones to Improve the Health of Babies and Children Around the World

Karen Cheng, FitBaby Co-Principal Investigator, University of California, Irvine

One of the things I love about our project and the other Project Health Design projects is the creative use of cell phones to collect data and share health information. Cell phones have so much potential to expand access to health care for people who, for any number of reasons (e.g., lack of health insurance, distance to a health facility, unsure when it is appropriate to go see a doctor), might have limited access.

I recently learned of an organization operating in the West African country of Mali that uses some of the same methods we use in FitBaby. Like our project, Pesinet is committed to the early detection and prevention of illnesses among babies and young children. The similarities between our projects show the power of mobile technology to improve health for children around the world. The differences highlight the stark contrasts between our problems and needs here in the U.S. and the problems and needs in West Africa.

FitBaby focuses on infants who are highly at risk for long-term chronic illness because they were born pre-term. Pesinet works with infants and young children (up to age five, 20 percent of whom do not live to see their fifth birthdays) in Mali — almost all are high-risk because of the poverty and lack of health care in the country.

Both projects use cell phones to record health information about the children and then transmit the data via the cellular network to a central database, where health care professionals can access the data and review it for concerns. In the FitBaby project, we offer smartphones to parents so that they can record weight, diaper use, fussiness and other ODLs in the convenience of their homes. Parents can use the data to help determine if they should contact a health care provider about their baby’s health. A nurse case manager may also contact parents if she or he is concerned about the baby’s health indicators. Pesinet sends trained health care workers to families’ homes weekly to assess weight, diarrhea, fever, vomiting and cough (learn more). The health care workers use a cell phone to record data, transmit the data to a central health facility and receive feedback about whether the family should take the child in for further medical evaluation.

I find it thrilling that cell phones can be used in similar ways all around the world to serve the health needs of babies and young children. Best wishes to the folks at Pesinet! May your work be successful in improving the health of thousands of babies in Mali!

Learn more about the FitBaby project.
Read more posts from the FitBaby team.

Fighting the Rain for a Great CHI Conference

Gillian Hayes, Ph.D., FitBaby Principal Investigator, University of California, Irvine

I spent last week in Vancouver at CHI 2011. CHI is always a hectic time; with more than a dozen parallel tracks and 2700+ attendees, it's the biggest conference I regularly attend. Health has become a huge topic of interest to the CHI community over the last several years, and we have increasingly been looking for ways to incorporate more health content to meet the needs of attendees. This year, there was more than a full day of health content, including three paper sessions, a panel on Facebook for Health, a panel on Engineering and Standards and Health IT, a Special Interest Group meeting, and multiple day-long workshops, including one on Personal Informatics, which is particularly relevant to Project HealthDesign. Last year, I co-organized WISH at CHI, which was 150 people all talking about interactive systems for health, and this year in response to the huge interest we got at WISH, CHI launched a health community, which I co-organized with Madhu Reddy.

I am most happy to report that both activities are happening again. WISH 2011 will take place in conjunction with AMIA this year and is being co-organized by Madhu Reddy and Lena Mamykina. The plan is to alternate WISH between CHI and AMIA to encourage more sharing of ideas and attendance by researchers who might normally only attend one or the other.

The CHI 2012 Health Community will be co-organized by Julie Kientz and Karen Cheng, my co-PI on Project HealthDesign's FitBaby team.

Why give you all these names and links? Well, my hope is that you will get excited about the burgeoning field at the intersection of human-computer interaction and medical informatics. Some of the topics we discussed at the Special Interest Group on health technologies were:

• How can you write for both human-computer interaction (HCI) and health communities?
• What can we do to have more impact, both clinically and commercially?
• How can we deploy technologies quickly enough to keep up with the field but in a robust enough way to satisfy clinical evidence needs?
• What are the special ethical issues we struggle to address as technologists and health researchers?

These are just a small sampling of the issues discussed at this year's CHI, and many are core to the goals of Project HealthDesign. We didn’t solve all these challenges at CHI 2011, and we probably won’t solve them at WISH/AMIA this fall or at CHI next year, but I am glad that we’re talking about them.

Have you been involved in CHI, WISH or AMIA? What other health topics have you been hearing about in these circles? What other groups are working at the intersection of health and HCI?

What’s in a Name?

Gillian Hayes, University of California, Irvine, FitBaby Principal Investigator

One of the strangest things we do in Information and Computer Science research is to name things like projects, software and research groups. We are big on naming. Difficult as it is to get a name just right, it actually turns out to be kind of important. The name of the project or software system is often the first encounter a research participant has with our work, and the name can greatly color what they think the project is all about.

When our project began, the focus was on supporting parents in conducting an assistive exercise intervention in the home. So, we thought about exercise and fitness and came up with the name FitBaby. As the project has evolved, however, it has become about so much more. Now we are working with parents and clinical partners to understand a greater ecosystem of care, one that includes tracking emotional and mental well-being as well as physical well-being. Our research includes families from all kinds of backgrounds; many of these families speak Spanish at home.

For these reasons, we thought we should go back to the drawing board to name our new system, which is the successor of the original FitBaby prototype. After much discussion, we settled on Estrellita, which means “little star” in Spanish. This name honors the cultural background of many of the participants in our studies over the years. It also has the added bonus of highlighting the baby as the “star” of the application and playing on the name of our research group (Social and Technological Action Research, or STAR).

We were concerned about various issues with the name. For example, Karen Cheng, co-principal investigator, made the interesting and compelling observation that many English-speaking Americans don’t know how to make the Spanish “y” sound for “ll” in the middle of Estrellita. This observation prompted us briefly to consider naming it Estrelita to encourage proper pronunciation.

In the end, we've found the name Estrellita to be a pretty good fit. Our team is pronouncing it properly, and Spanish and English speakers alike respond with “Awww!” when told the name (and its meaning for the English speakers). We hope our future Estrellita users like the name as much as we do.

Do you take similar care when naming projects or technology? How have users responded to the names you’ve chosen?

Read more posts from the FitBaby project team.

Listening to Health in Everyday Living

Patricia Flatley Brennan, R.N., Ph.D., Project HealthDesign Director

About three years ago, our Project HealthDesign project teams began hearing something odd and unexpected from the patients involved in their user-centered design activities — the sound of health in everyday living! Health doesn’t come labeled in the professional, clinical-speak of signs and symptoms. It sounds like a family’s laughter, strained dinner conversations or the peaceful snoring of a parent who’s sick. It sounds like the birds one hears while taking an especially long walk or the raspy breathing that precedes an asthma attack. It sounds like the words an elderly woman uses when she explains to her physician that she “just doesn’t feel right” after taking her medication.

We’ve called the phenomena these sounds reflect “observations of daily living,” or ODLs. ODLs are sensations, behaviors, environmental exposures, thoughts and social experiences that serve as clues to health and health activities. We have been trying to better understand the stories they tell.

We’ve learned that with ODLs, there is a jargon or rhythm to the sound of health, and that it doesn’t sound at all like the sounds of health care. What it does sound like may be idiosyncratic, or unique for each patient. Like the more familiar signs and symptoms, ODLs provide snapshots into a person’s health situation. However, unlike signs and symptoms, which have a scientifically proven link to an underlying health process, ODLs represent what a patient pays attention to; this is why ODLs  are so important for patient-centered care.

Our five current Project HealthDesign project teams are hearing about a whole new set of ODLs. Listen to what they are hearing:

The Embedded Assessment team at Carnegie Mellon University is using sensors embedded in household objects such as coffee pots, telephones and pill boxes to monitor how well elders are doing everyday activities. Understanding how well — or how poorly — an elder performs routine tasks may provide the early warning signals needed to bring help in a timely fashion. The sensors, if fired in the anticipated sequence, will show that the person is handling things just fine. However, sensors firing out of sequence or not at all suggests that some type of cognitive disruption is occurring — perhaps the elder can’t remember the steps to making coffee, or has forgotten to take meds at a certain time. Of course, one misstep doesn’t equate to profound confusion. That’s why we think of ODLs as sentinels, not signals. The ODL here is the firing sensors; this ODL must be interpreted and validated in order to serve as an indicator for action.

The iN Touch team from San Francisco State University is reaching out to teens who are both obese and at risk for depression. This group is going to use camera-equipped cell phones to prompt the teens to take photos of their food, record their menus on the spot and to rate things like: feelings, interactions with others, and activity levels. The ODLs here might sound like nutrition, mood, social activity and using the phone to capture information in real time. This information will be stored and reviewed later with a health coach, and could serve as the key for real success in weight management.

Again, awareness of ODLs is only part of the story. The other part is looking for patterns in the clues. It’s a lot like the sound of a crying baby — crying is an ODL, but distinguishing between the sound of a distressed cry and a bored cry means the difference between responding with comfort or stimulation. And, speaking of babies crying, we’ve wondered whether ODLs exist if you can’t hear them or know what they mean. But of course they do!

The FitBaby team at the University of California, Irvine is working with parents and young infants. They’ll be looking at how things like the number of diaper changes or the sound of a mom singing to a baby give clues to the quality of the parent-child relationships and the health of the baby. They’ve created a Mind Garden to appraise parents’ stress levels, and are using photos of baby poop to evaluate the adequacy of baby’s nutrition.

Over the next few weeks we’ll be introducing you to more sounds of health in everyday living. Join us on the journey to decode these clues and figure out how to use them to improve health!

Read more posts about ODLs.

Dogs as Animal Models for Research

Gillian Hayes, University of California, Irvine, FitBaby Principal Investigator

As a researcher who focuses on computing systems and their designs and uses, the checkboxes on all my various research oversight forms for preliminary animal research and animal models never made a lot of sense for my work. Two things happened this month, though, that made me rethink the whole idea of animal models for my research.

First, I watched a fascinating PBS documentary about dogs. As a dog-lover, I was keen to learn about the co-evolution of our species, both biologically and sociologically. Dogs are key animal models for research in the standard sense of being good disease models for certain human diseases. Beyond that, however, their evolution and behavior also serve to inform us about human history, migration patterns, the development of societies and more. From this documentary, I also learned the important role that dogs have in acting as “juveniles” in the lives of humans. In other words, we like them in part because they act so much like human children.

That got me thinking about one interesting way I have used my dog in my research lately: as a proxy for a premature infant. I have been debugging our FitBaby application for the last few weeks by logging information about my 9-year-old retriever. When my dog Savannah and I go out for a walk, I log in our application “Took baby for a walk;” when Savannah poops, I log another dirty diaper in the application.

As is to be expected, I have found in our software a lot of little bugs, which we are fixing. What surprised me, however, is how I began to change my behavior. I never sing to my dog. First of all, I am not a great singer, but secondly, it has never occurred to me that she might like it. The little icon on the screen that I am not earning by not singing, however, has a profound effect — one that we planned it to have on parents, who we hope will sing to their babies. I find it taunting me, wanting to be earned, and so I sing to my dog. She actually seems to like it. So, maybe we are on to a new tradition.

Learn about FitBaby.
Read more posts from the FitBaby project team.

FitBaby on Cutting Edge of Affiliation Between University and Hospital

Dini Baker, Clinical Partner at Children’s Hospital of Orange County

The University of California, Irvine (UCI) and Children's Hospital of Orange County (CHOC) are in the midst of an affiliation process. Of course, the concept of affiliation and the actual process of affiliation are two very different things. Although the concept is fairly simple, the actualization process can be painful.

In our experience, the last areas to move toward affiliation are the research programs. FitBaby is the first collaborative project to move through the human subjects research ethics approval process since the affiliation, and we have been working out many particulars. Navigating the protection of human research subjects when the research teams are from different institutions requires additional planning and safeguards, particularly when one institution focuses more on academia and the other on clinical services. Even the Institutional Review Board (IRB) language has different interpretation. The principal investigators (PIs) and the research team from UCI and Charles Drew University (CDU) have begun jumping through additional human resource hoops. For example, health screening and background checks provide additional safeguards to ensure the team meets CHOC standards.

Despite the detailed process involved in the affiliation, each team has benefitted from the new arrangement. The greatest advantage for the CHOC team is the wonderful opportunity to share ideas and negotiate compromises as the project gets underway. For the UCI/CDU team, working with the CHOC team is a great opportunity to do research alongside individuals who focus on pediatric care. We are looking forward to our first recruitments of 2011 and to seeing whether adding this technology to the dynamic of high-risk infants will increase or decrease the caregiver burden. We also hope the FitBaby project will showcase this new affiliation between UCI and CHOC.

A Reminder of the Important Work We Do

By Gillian Hayes, University of California, Irvine, FitBaby Principal Investigator

Last week I got one of those emails you hope never to get. A young child, a participant in a former study, had passed away. I don’t know the medical details of her death, but I do know the child had a severe infection. She was sent home from the hospital with the hope that she had only a small infection, and her parents were instructed to bring her back only if she began to pass blood.

Commonly seen at any hospital, the available resources are continually constrained, and often those children who do not seem to be the sickest are sent home with medication to rest and recover away from the kind of powerful monitoring equipment and medical expertise available at the hospital, sometimes with devastating consequences. Further complicating the situation, research would suggest that the parents, not native English speakers, most likely had difficulty in communicating with the physicians about their daughter’s condition.

Unfortunately, this is not the first time I have experienced the death of a research participant. During my doctoral work, a child enrolled in one of my studies had a fatal heart complication. The videos we took of her for our research are some of the last images of her alive. There have been other heartbreaking events during my research since. This is only the latest, but I am sure not the last.

To the medical researchers and clinicians reading this blog, perhaps these life experiences are familiar. Sadly, every day, in hospitals and homes around the world, patients are dying. For me, however, as a professor in Information and Computer Science, these experiences can be a bit jarring—particularly when I compare them with the kinds of everyday experiences my colleagues have with participants in their studies.

As sad as these events can be, however, they serve an important purpose. They remind me why we are doing what we are doing. As designers and inventors of new technologies, we may not be creating the next great vaccine or finding new therapies for stem cells, but in our own way, we are creating tools to help heal. It is my sincere hope that infants and toddlers like the one who recently passed will not be sent home from the clinic with assurances of a quick recovery if all of the information we are collecting and sharing is available to the parents and their physicians. I hope that more information and more empowered parents can improve communication with providers and that those providers will listen, incorporate this information into their practices and at the end of the day, patients will receive better care.

Action Research: A cyclical intensity for sustainable social change

By Gillian Hayes, University of California, Irvine, FitBaby Principal Investigator.

Read all FitBaby blog posts.

“The best way to understand something is to try to change it.” – Kurt Lewin

My research projects tend to focus on the creation of local,
sustainable, social change.  To me, it is impossible to develop
feasible solutions to real problems without intense, and sometimes
very messy, engagement with the people and problems that lie at the
heart of these projects.  Action Research (AR) offers a systematic
collaborative approach to research that satisfies both the need for
scientific rigor and promotion of sustainable social change.

AR is explicitly democratic, collaborative, and interdisciplinary.
The focus when conducting AR is to create research efforts “with”
people experiencing real problems in their everyday lives not “for,”
“about,” or “focused on” them.  AR is cyclical in nature, with an
emphasis on problem formulation, design of an intervention, action,
observation of the effects of the action, reflection, and then
redefinition of the problem to start the cycle again. The goal is not
to arrive at the solution but to attempt to create a solution that is
in some way “better” than previous solutions and helps the actors to
learn through the action they take.

 The steps we take in my lab usually fit the model for AR:

(1)    Find a community partner. We always try to remember, we are
research facilitators and partners not observers outside the realities
of the situation.
(2)    Develop problem statements and research questions together with
community partners.
(3)    Design sociotechnical interventions with our community partners
not for them.
(4)    Evaluate our interventions while considering outcomes that are
important to community stakeholders and to our research team.
(5)    Write with our community partners…. Not just by adding their
names to our papers or getting casual feedback, but really writing
together.
(6)    Celebrate the things that have gone well regularly.
(7)    When we leave, make sure we created sustainable change, which
means they don’t need us anymore.
(8)    Act ethically, which for AR means ensuring community partners
have a lot of power as both participants in the research and
co-creators of the research design.

Translating the Meaning of ODLs into Meaningful Use Criteria

By Patricia Flatley Brennan, Director, Project HealthDesign.

Read all of Dr. Brennan's blog posts.

Last month, Sheba George, medical sociologist from the FitBaby project, offered up some important insights about ODLs as they relate to caring for high-risk babies (read George's blog post). ODLs are sensations, behaviors and thoughts that give cues to health states and prompts for health action to an individual or to that individual’s parent or caregiver.

Early on, George reasoned that as a parent, she’d like to know relevant ODLs about her baby that let her know the baby was doing OK, things like sleep adequacy, comfort level and range of motion. Once she started talking to the parents of the kids involved in FitBaby, she noted a pretty significant difference. While George found the idea of ODLs reassuring as a parent that her baby was fine, the parents in the FitBaby project wanted to be able to share information about their babies by relating ODL information to others.

George’s comments bring to light some of the many aspects of ODLs. They have personal meaning, and the value of tracking and interpreting specific ODLs may be as wide and as varied as those who do the tracking. We at Project HealthDesign are deep in to the work of our five grantee teams, who are in turn learning from patients many things about ODLs. Who wants them? What do they tell us about a person and that person’s health state? Are they silent signals that parents can follow to make sure their kids are progressing? Does a single ODL mean much, or are trends and plots of ODLs really what is important. Who needs to know about a person’s ODLs and how often?

Over the next few weeks, students from the Project HealthDesign NPO team will be sharing their thoughts and learnings about ODLs -- we’re offering these diverse perspectives for two reasons: 1) to stimulate YOUR thoughts about ODLs and how they may complement and extend our understanding of a person’s health state and health behavior and (2) to provide a rich set of experiential knowledge for the ONC as they prepare the criteria for Stage II of  the Meaningful Use initiative. Come along with us and explore!