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.

Meaningful Use and Observation of Daily Exercise

By F. Daniel Nicolalde, Project HealthDesign PhD Student – UW-Madison

We are constantly making health choices in our daily living and everywhere we go. For example, Francisco decides to go for a bike ride and halfway into his journey he decides he would like to add 10 miles to his route. First, he has to decide whether this will be a good choice given his current physical condition or if it will put too much strain on his cardiovascular system and knee injury. However, without knowing his current physical condition, previous workout history and the state of his healing knee, he is unable to make an informed decision about whether or not to add the 10 miles (see "They can't do it alone").
 
On the other hand, professional athletes know very well their limits and how much they can push their bodies. Unlike Francisco, they have the tools (monitoring devices) and resources (people) that can help them make those decisions on the go, to make the best of the time they expend exercising and training. They have the data to push their bodies to the limit in order to go faster and for longer periods of time.
 
In the example of Francisco, a layperson, the circumstances are different. He does not have a team of consultants that can keep track of his vitals while he is exercising and storing observations about his previous workout sessions (see "I track my exercise - but then what"). At best, the information he stores is episodic and more often kept only as mental notes that he can use in the future as a point of reference.  
 
Observations from our exercise activities provide meaningful information for our health care providers and useful information for our self-care and self-management. These observations have the potential to optimize the time we spend exercising by customizing our workout routines to our specific needs.  
 
Going back to Francisco, if one of his goals is to reduce his weight, keeping track of every bit of information about his exercise routine can help his nurse practitioner and dietician guide him to a specific weight goal. In this particular case, personal health records have the potential to improve care coordination between his dietician, physical therapist, private coach and nurse practitioner in order to reach Francisco’s weight goal faster, as well as keeping him engaged in his health care.

Communication and ODLs – Unedited, a Physician's Perspective

By John Liesveld, Web and Social Media Support, Project HealthDesign

Seated on the crinkly paper of the examination table, under the pasty sterile glow of fluorescence, wearing only a lightweight gown and skivvies, a lot of editing can occur in the mind of a patient before he speaks to his doctor.

But when it comes to a chronic illness, such as Crohn's disease, an honest, accurate and timely account of ODLs makes a profound difference - sometimes between life and death. It's an idea that epitomizes one of Project HealthDesign's major themes -- more efficient, accurate and streamlined communication.

Dr. Jonathan Terdiman, a professor of Clinical Medicine and Surgery at the University of California at San Francisco who specializes in inflammatory bowel disease (IBD) and serves as a co-principal investigator for the Crohnology.MD project, says discrepancies in communication create one of the biggest barriers for doctors to overcome in treating and improving patient health and can result in adverse health outcomes.

An illness like Crohn’s disease produces a series of debilitating symptoms that fluctuate daily, sometimes hourly, and require critical attention from both a doctor and a patient in order to maintain health. Unfortunately, without good methods for recording and evaluating symptoms and their potential causes, patients are more likely to provide inaccurate summaries of their ODLs and may affect their doctor’s ability to effectively treat the disease.

The complex symptomatic variations of an illness can lead to a common barrier that physicians like Terdiman face with each patient: communication. And he emphasizes, it is “very hard to capture the full depth [of a patient’s health] in a single visit." Whether it’s simply forgetting to mention something or only saying what the patient thinks the doctor wants to hear, finding a way around communication barriers like these is key to accurately tracking ODLs.

“One of the challenges is to try to come up with some sort of a compromise to assimilate, tabulate and streamline data,” Terdiman said. He explains that by providing a patient with the right tools (e.g. a smartphone containing specific software apps) they can record and track symptoms in real time, correlate those symptoms with diet and medications and then upload the data to an EMR that allows physicians to depict trends in a graphical display.

With the right tool and software we will “enhance our ability to really understand what’s happening with the patient," Terdiman explains.

Developing that tool is a major objective of Crohnology.MD and other research projects developed by Project HealthDesign. In practice, Terdiman has long recognized a need, identified by patients, for a tool that records, assimilates and summarizes data in way that identifies trends and possible underlying causes of symptoms and is excited to work with the grantees to make the tool a reality.

Navigating the path to Meaningful Use goals.

By Tim Patton, Computation and Informatics in Biology and Medicine (CIBM) Trainee, Project HealthDesign NPO, University of Wisconsin-Madison

As we have posted (They can't do it alone - ONC needs everyone's input), we at Project HealthDesign want to make meaningful use really useful for patients.  At the same time, we want to facilitate communication between patients and physicians, nurses, public health workers and other clinicians.

ONC has stated that the goals of Stage 2 and Stage 3 are as follows: 

• By 2013, meaningful use of HIT should guide and support care processes and care coordination.
• By 2015, meaningful use of HIT should yield measurable improvements in quality, safety and outcome of care processes, including enhanced quality measures and extensive decision support at the individual and population level and enriched tools for patient self -management.

For Stage 2, it will be important to focus on the best use of resources.  Given the short time horizon, we would be best served to focus our efforts on:

• Generalized data structures that support physical activity, diet, and sleep. These are emerging as ubiquitous ODLs and represent the best value proposition as we begin to integrate support.
• Flexible tools that allow individuals to view the data as I see fit.  As we gradually come to understand the underlying ODLs, how we decide to view the underlying data will grow with our understanding. This might take the form of tools that will allow anyone who accesses that data to form a “view” that highlights the meaningful aspects while removing the noise.  Furthermore, if a lay person opts to share his/her view, others can understand the personal importance of ODLs (which may be very different from a professional’s view).

For Stage 3, it will be important to continue to build upon previous efforts to make ODLs more useful to everyone involved by:

•  Expanding support to other ODLs that fall outside the “big three” mentioned above.
•  Supporting disambiguation by combining multiple methods of capture (coding accordingly so others reviewing the data will know how it was captured).  For automated capture, calibration and algorithms can influence the data collected.  Self report suffers from a large array of influences.  To strengthen the information that can be derived from the data, it might be beneficial to combine collection methods (e.g., if automated collection agrees with self report, then we might increase our confidence that the data represents an accurate picture).
•  Recording the ambient context (reality mining) by connecting ODLs with other forms of data, such as GPS camera images, allergen counts, sound pressure levels, etc.  This might lead to new insights into how ODLs are related to contextual or environmental factors.
•  Creating observation standards that serve to identify the original source of the data, such as automated or self-report. This might play a role analogous to LOINC Codes, which can identify the specific lab test (with a set of standards and assumptions) that produced the value in the database.  As new devices and techniques come to market, they can be certified against such standards, thus insuring a certain level of consistency across vendors.

For ODLs to provide meaningful use, they must go beyond isolated data points and become truly connected to the full tapestry that describes personal health.

Staying iN Touch: Community-engaged Research with Insiders and Outsiders

By Janelle Charles, Graduate Student Researcher and Katherine Kim, Principal Investigator, iN Touch, San Francisco State University

Read all iN Touch blog posts.

We first conceived of iN Touch two years ago at a local conference on innovation in health care services. One of the speakers talked about health care being stuck in the old paradigm of building large, complex, Cadillac solutions that require long implementation and training cycles in order to be effective. The new paradigm is just the opposite: building small, simple portable solutions that are intuitive and immediately valuable.
 
And so, the idea for iN Touch emerged—a small, simple portable way to help low-income youth with overweight/obese and anxiety/depression track their health and share that information with the care team to improve collaborative health management.
 
Here at the Health Equity Institute, we ascribe to several tenets including innovative research, community engagement and equal access to health.  For iN Touch, we had a real opportunity and obligation to engage community. But that meant admitting we didn’t know everything and letting go of a little control. The first was easier than the second.  
 
We as the research team are “outsiders.” We aren’t youth, although we all used to be. We aren’t low income, although some of us used to be. We aren’t anxious or depressed, but some of us wish we could lose weight. We need “insiders” to inform and direct our research. So, we created the Youth Advisory Board (YAB). We will meet with them six times over the course of the project to gain insider information about the future participant pool and prepare us for the myriad challenges unique to our study.

We have already gleaned several key insights from the YAB. In their own words:

Feelings of guilt and reluctance to report on eating patterns (via photos) and  mood, to health care providers.   

“…since it’s your doctor and they’re watching… your health, you might feel guilty about [taking pictures of your food]… ‘all I eat is McDonald’s… they’re gonna see that I eat a lot of bad food, so I’m going to lie and not send them my picture.’”

Trust between the patient and care team

“… a really good idea… [is] acknowledgement that there [are] gonna be days when you’re not eating healthy, then they know… like ‘oh, we know and so just tell us,” you know, it’s not a secret…” 

How much time would you spend on a daily basis collecting… information? 

“When I collect the date, I don’t want any… more than like five touches.  I don’t care about the time, but… it better be like real quick, like five [touches]. Five is my limit, pushing it.”

 
These open dialogues with youth will help us get to know our target population and avoid silly mistakes: like contracting a health coach who cannot relate to youth or developing a complicated application that requires teens to use more than “five touches” on a mobile device. Although we will undoubtedly encounter obstacles over the course of our study, YAB will keep us iN Touch.

Nashville: A Moment to Reflect and Look Ahead

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

Read all Embedded Assessment blog posts.

As part of our work on Project HealthDesign, all five teams, members of the national program office,
advisors from the national advisory committee, and others come together every few months as
part of a series of workshops at the Vanderbilt Center for Better Health in Nashville, TN. These
intense two-day gatherings give us a chance to get together, talk about major issues that are
impacting our projects or that would help advance the conversation about observations of daily
living, look for opportunities for collaboration and make progress within our individual teams.

Over the last two days, we have been focused on thinking through our plans for evaluating the
systems we have been designing and building. These conversations have covered such diverse
topics as how to properly incentivize both patients and providers and what kind of help desk
support we might need during our evaluations. Of course, we also talked about the science
behind collecting, sharing, and using observations of daily living. It has been exciting to
talk through research methods with such a diverse set of scientists and practitioners. Our team
brought extensive experience with deploying and evaluating technologies in real world
scenarios, while others brought clinical trial experience and so on. As we move forward
as a program and as part of larger research communities, this kind of cross-disciplinary
project and discussion will continue to be important, not just for our research but also for
policy and practice.

Helping Others and Ourselves: The Heart of Collaborative Design

By Tom Lloyd, Director, VCBH – Innovation Center.

As the design consultancy to Project HealthDesign, our team at the Vanderbilt Center for Better Health (VCBH) simultaneously supports the collaborative efforts of the project as a whole and its parts.

Design work moves through cycles of cycles, especially across something as complex as Project HealthDesign.  As this week’s third collaborative design session begins, we are completing a cycle in which each grantee has produced their individual plan for evaluating their solution designs. The focus of our early work together in the session will focus on each grantee having an opportunity to complete a design review with members of the National Advisory Committee (NAC) and their peer grantee teams.

Each grantee team will have a great opportunity to test their evaluation approach and learn how to tighten it up to capture the maximum amount of research value form the data. The additional benefit of working together is the opportunity to develop strategies, looking across all designs and evaluation approaches, that will wring the greatest value out of our collective ODL data set.

The second goal for the session is all about finding the complementor and competitor relationships between grantees. Think of complementors as grantees whose concepts or methods for capturing, storing and using ODLs will add greater value when used together. Naturally, the competitor is different because using either method replaces any need for the other. From a research perspective, either approach can add value.  Complementors can reduce development costs as well as providing broader capabilities to grantees.  Competitors can clarify user preferences by providing either/or comparison.

The VCBH Innovation Center team is looking forward to learning a great deal about where the grantees are headed and helping them get the most out of their efforts individually and collectively.

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!

Android phones: Now that I have one, how do I develop programs?

By Jay Levinsohn, BreathEasy Technology Lead and Yuying Zhang, Lead Developer, RTI International.

Read all the BreathEasy blog posts.

The Android platform is a relatively new open source specification for mobile operating systems. The Android operating system software, hardware to run it and “apps” are all growing very rapidly. In fact, Android phones have taken over the number two position in SmartPhone sales, over taking the Apple iPhone. How does one develop for this platform and the moving target it presents?

There are a number of development paths that one can use to create programs or “apps” for Android based applications. Development is supported for Windows based PCs, Apple Macs and Linux-based machines (e.g. Ubuntu-based), and they have free software tools, so cost is not really a factor. The RTI developers on this project are experienced Windows and .Net developers, so the choice of the Windows platform was the logical and comfortable place for us to start.

Windows-based Development Options

In Windows there are a number of options, including Google’s visual App Inventor and the most often recommended and widely used Eclipse.

App Inventor is designed to allow rapid application development with minimal coding and provides a visual environment with drag and drop placement of controls on the screen. It looks very interesting, however it is still in Beta and not widely available so it was not a viable candidate.

Eclipse is a general Java development environment, which is a visual shell that ties together a number of developer tools. It also allows the addition of modules to support Android development. The components that are needed to start development in Eclipse are:

• Java SE Development Kit - JDK 6  
• Eclipse IDE for Java Developers       
• Android SDK
• Install the ADT Plug-in for Eclipse 

Early Findings on the Development Environment

As of this writing, the tools provided in Eclipse and the Android API seem to allow the development of complex programs. The API provides access to the hardware components of interest (GPS, camera, accelerometer, compass, power control), good support for a SQL file system (SQLite) that allows use of complex data base structures that can be shared among applications and support for web data transfers. There are also useful online samples, with source code that help with the learning curve for both systems.

Additionally, there is a very active and rapidly growing online community of developers, a good emulator (albeit somewhat hard to configure) that allows development without Android hardware and a bridge program (adb) to connect a real Android phone to a PC for file transfers, actually running UNIX commands on the Android and making screen shots or projecting Android images for training.  At first blush, there appears to be fewer screen controls that are typically used in Windows apps but those provided are adequate.

Overall the Eclipse development system is not as polished, not as visual, nor does it seem to be as strong as Visual Studio, but it certainly provides a good development base.