BreathEasy by the Numbers

Barbara L. Massoudi, M.P.H., Ph.D., BreathEasy Principal Investigator, RTI International

We're excited to share a quick update now that we're just about at the halfway point in the intervention:

• We've recruited 30 patients who have been actively submitting data through our mobile app for about three months now.


• The patient-generated data is viewed by two types of clinicians participating in the study: family physicians (n=13) and nurses (n=7).


• The nurses review the data at least once a week, but some review more frequently. When they see something that concerns them, the nurses flag the data for additional review by the patient’s physician.


• Twenty-two patients have been in for clinical visits since the intervention phase began, but not necessarily to be seen for their asthma.


• Two patients have received new diagnoses as a result of the intervention.


• Sadly, two of the mobile phones have been stolen to date; one was retrieved and the other is being replaced. We've worked through the appropriate safeguards and reporting processes related to these losses.

Check back next month to learn about the many technical challenges we’ve had that relate to the phones.

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Identifying Potential Participants from an EMR, Part 2: Now That’s More Like It!

Stephen Rothemich, M.D., M.S., BreathEasy Co-Principal Investigator and Clinical Lead

Last November I wrote (okay, whined) about the challenges to selecting a pool of potential subjects for the design phase of the BreathEasy project. At that time, the limited data in our newly implemented EMR made it necessary to use medication lists to find patients. It was both complicated (I needed an EMR data programmer to do the query) and messy (I did a lot of chart reviews to winnow a list of 271 down to 151).

What a difference a few months has made! We needed to identify a slightly different patient pool for the evaluation phase. In the interim, clinicians at our two study practices, including me, have been diligently inputting medical conditions into the EMR’s problem list. With that additional data, this time we simply looked for patients with asthma on the problem list, a prescription for an asthma controller medicine prescription in the last 12 months (a proxy for moderate to severe asthma) and residence in an urban zip code. A second advantage was that had I learned to use the EMR data query tool. As a result I could do the query myself, come up with a list of 83 patients that I was confident met our selection criteria, and avoid hours of chart reviews. After just a few days of calls, we've already recruited a quarter of the30 participants needed. If necessary, it will be simple for me to expand the pool a bit by replacing the maintenance medication criteria with a prescription for a steroid taper (used to treat asthma exacerbations, so another reasonable proxy for more than mild asthma).

This time it was actually fun. Bottom line: Better data plus a data retrieval tool I could use myself equals better results with a lot less effort.

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Developing a Learning Application

Barbara L. Massoudi, M.P.H., Ph.D., BreathEasy Principal Investigator, RTI International

I recently had the opportunity to sit with Roni Zeiger, M.D., chief health strategist at Google, to discuss the progress of my work on the BreathEasy project. I asked him about his thoughts on the ideal duration of an intervention that involves personal health records (PHRs), as well as his understanding of the drop-off rates related to mobile application use over time. We discussed the idea of not making patients dependent on an application, but rather using an application as a learning tool-- to enable behavior change based on that learning-- and then to move on, perhaps not using the tool for a time period, or potentially ever again. For a condition like asthma, this temporal use of the application might relate to the seasonality of symptoms (e.g., not needing to use the application in the winter) or could be a result of identifying triggers and learning how to better manage exposure to them.  

One very interesting idea Dr. Zeiger raised was the notion of a learning application. He described a learning application as follows:

1. In the initial phase, the patient receives the phone and learns how to operate the technology. After about two to four weeks, the patient is comfortable using the technology.
2. Then, the patient begins to use the application itself, but only to accomplish one specific task for about two to four weeks. For example, a participant in the BreathEasy study might record one type of observation of daily living (ODL), such as triggers related to their asthma symptoms.
3. Next, there’s an educational component, during which the patient reviews the information using simple visualization tools that depict the relationship between the two ODLs, in this case triggers and symptoms.
4. At this point, supplementary learning materials (e.g., a website listing ways to clean the home or pets to minimize exposure to allergens) can be presented.
5. Then it’s time to move on to the next learning opportunity, perhaps symptoms and maintenance medication use or some other set of ODLs where learning can occur.

This cycle continues until all the learning objectives have been met, one by one, and the patient is better able to manage his or her condition.

What do you think about this approach? What are its strengths and weaknesses? Would you try applying this method in your next research study?

Challenges to Identifying Potential Participants Using a New EMR

By Stephen Rothemich, MD, MS, BreathEasy Co-Principal Investigator and Clinical Lead

With BreathEasy’s focus on people with asthma and comorbid anxiety and/or depression, one of the challenges is how to identify potential subjects for upcoming focus groups. While we are working with two inner-city clinics using the same electronic medical record (EMR), the process has not been as simple as you might expect, as our health system is still in the process of implementing the EMR.

Ideally we could have used patients’ problem lists in the EMR to identify those with the overlapping conditions of interest. While both practices have been using the EMR for labs and prescriptions for a while now, one site began full electronic documentation just a few months ago. Since it will take a while for these practice populations to have office visits, most patients don’t yet have an electronic problem list. Identifying potential subjects starting with manual reviews of the lists in paper charts was impractical; there were 6,277 patients in our target age range!

Next was the diagnosis billing codes from recent visits. Here we encountered two pitfalls: 1) every chronic condition present or even addressed at a visit doesn’t necessarily get included in the maximum of four diagnosis codes that we submit for each visit and 2) our billing system is separate from our EMR system. Since we just had access to the latter for this project, we could only capture billing diagnoses associated with orders for labs or x-rays.

That left the medication lists. Both clinics have been using the EMR to generate prescriptions for over a year. So while we incorporated data from problem and diagnosis lists, our search strategy relied on the better populated medication lists. However, medications can be prescribed for more than one purpose. Some antidepressants are also used for sleep or chronic pain, or even conditions we needed to exclude, such as bipolar disorder. An oral medication might be used for allergies and not for asthma control.

We found 271 potential subjects based on all available electronic data in the problem lists, diagnoses, and medications that might be used for the target conditions. Because we relied so heavily on medication data and the exact indication for many prescriptions was ambiguous, review of electronic charts was necessary in 176 cases. Paper charts were reviewed for 38 patients where EMR review was not helpful. All in all, we had 151 subjects with the conditions of interest. While we didn’t have to do the whole process with paper chart review, good electronic problem lists would have made life easier. So I’ve decided to stop grumbling about building those lists when I see my own patients. Stay tuned to learn what we’ve heard from the focus groups!

How Long is Long Enough for an Intervention?

By Barbara L. Massoudi, Project Director and Murrey G. Olmsted, Senior Advisor, BreathEasy, RTI International

For patients using our smartphone application for collecting and tracking ODLs, lately the team has been wrestling with the question of how long to run the intervention. Given that asthma is a chronic condition with intermittent, and often unpredictable acute exacerbations, we would need to collect the ODLs for a sufficiently long time to increase the likelihood that we’d capture data during at least one acute exacerbation period, but not so long that the patients would tire of using the application.

It seemed to us that there would be some ideal length of time that would balance both of these considerations, while giving us adequate time to allow for iterative improvements to the application based on patient and clinician feedback. The question of how long to run the intervention is made more complicated by the fact that typically, behavioral interventions are supported by regular interactions with clinicians over time, and that there is a process to incorporate the intervention into the patients’ lifestyle and the clinical practice.

We consulted with Project HealthDesign National Advisory Committee member, David Ahern, Ph.D., to get his recommendations on this question. After an interesting discussion with David, we concluded that the best approach would be to conduct two short intervention periods of two to four weeks each, and then run the final, full trial for three months. 

During week one, David predicted, patients and clinicians would be getting used to the tool. The following two to four weeks would provide enough time then to get good compliance with ODL tracking. Following this four week intervention period, we’d collect feedback from patients and clinicians, adapt the system and then run another short intervention. We’d again make improvements to the tools and then begin the full evaluation trial for a three month period, giving us enough time to gather ODLs when patients were likely to have at least one acute exacerbation.

This timeframe for the evaluation discussed feels right to the team. We never expected that we’d create a tool that patients would necessarily have to use forever. The key to ultimately answering this question will be fine-tuning the intervention period to determine just how long patients and clinicians will need to use the tools to see the benefit. To answer that question definitively, we’d need to do a follow-up study looking at differing lengths of interventions and their relative effectiveness in achieving the intended outcomes. For now, we’ll focus on getting the tool right and achieving patient and clinician compliance for our limited evaluation phase.

To those who have had similar scenarios with patients, have you ever encountered an issue quite like this?  If so, how did you test it out to find what works best for patients?

Scanning the marketplace for asthma, anxiety and depression tracking applications

By Rita Sembajwe, Health Informatics Specialist, BreathEasy Project Manager, RTI International.

Read all of the BreathEasy blog posts.

As the BreathEasy project moves along, the time has come for the team to synthesize our mobile phone application findings related to asthma, anxiety and depression in order to compare them against each other and determine a baseline. Doing this allows us to improve or advance the baseline, instead of duplicating what already exists.

Both the Android and iPhone marketplaces already host some progressive applications. We are reviewing a handful of them and in the process acknowledging things like: user ratings; differences and similarities in technical and scientific features; user friendly architecture; and their target audience.

The asthma applications range from: applications that track peaklfow readings with the help of a graph; electronic asthma journals that track an individual’s asthma symptoms and medication; and applications that do a combination of both. A majority of the depression applications use a set of questions or a depression scale, e.g. HDRS17, built-in to detect and track depression symptoms.  All of the anxiety tracking applications in our selection were a combination of depression, or asthma tracking applications. 

In their own way, all the applications promote innovate ways to track and control conditions, but so far the Asthma Journal is our favorite when it comes to choosing an application that inspires the BreathEasy application development process. It tracks an individual’s asthma symptoms and medication, and has the ability to automatically share them with clinicians and whoever else via Google Health. A similar application on iPhone, Asthma MD, also tracks and charts asthma symptoms and enables the transfer of data to clinicians.

It is also worth highlighting the asthma and anxiety application, TBDeluxe, developed by Kumquat Portable Apps on Android.  It trains those who need to correct their breathing volume on how to breathe.  It tracks an individual’s breathing and guides inhalation and exhalation allowing the oxygenation of organs and systems and in turn reducing symptoms of allergies, asthma, anxiety, stress, and panic attacks, among others. 

BreathEasy will expand on the baseline of the marketplace by developing an Android based, user friendly application that tracks patient’s symptoms of asthma, anxiety and depression, by capturing relevant observations of daily living (ODLs).  Data collected will then be directly available to clinicians via a web dashboard. The target population of this application will be involved in the design and development of this project, through requirements gathering and testing.  We think our user centered design approach will spell success. To hear more about this application…stay tuned!

You’re a PHR vendor? Really?

By Patricia Flatley Brennan, Director, Project HealthDesign.

From the HIT tradeshow floors to the halls of HHS, we’re hearing LOTS about PHR vendors—what is their product? Can it be certified? Should it be HIPAA protected?

But what is it? At Project HealthDesign, we see PHRs as suites of services - platforms, programs and data stores – united in a way that helps individuals manage their health and health care, and perhaps form the very core of crowd-sourced health as in the Asthmapolis.

Vendors of HIT products and PHR tools will play an increasingly important role in mapping out the landscape of personal health information management – but nowhere on the terrain do I see a single vendor for a freestanding PHR taking hold!

It’s time to stop looking for the turnkey PHR and start realizing that the idea of a single PHR as the sole point of intersection for all data, services, and visualization tools needed by a lay person to manage his or her health is so 1999.  It’s time to recognize that the suite of tools needed by one person to manage asthma or handle diabetes might well be quite unique to that person’s life process, health state and personal preferences, and quite different than that needed by another.

All is not lost! Think for a minute why the analogy of a PHR as a great big binder of data is so pleasing – it allows for a single point of entry, it enables extension of known privacy and security approaches, and it most likely tethers patients to a care provider.  All of these advantages are still possible in a distributed model of PHRs, in which data from various sources are integrated on the fly into a single view to help a person to know what action to take now. Privacy and security tools can follow the data, not become the responsibility of the data holder.  Visualization tools can become enablers, not end points.  And the link to the clinical provider is fostered by the value of the care choices enabled, not the ties that bind the data.

A PHR vendor? So 1999 - let’s party like it's 2010 and invite everyone in!

Taking the time to focus

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

The BreathEasy team has spent significant time this past month developing our focus group guides to begin to understand the users’ (both patients’ and clinicians’) needs for the PHR tool.  The guides will help us facilitate the discussion around particular topics that are of interest to our research team. There are so many things we’d like to know about the users’ needs, preferences, opinions, beliefs, etc., that paring down the topics is challenging. Here’s are some of the questions we’re thinking about including, please let me know in the comments if you have some other ideas we’d want to consider as well.

Living with asthma and depression or anxiety
What are the biggest challenges in living with these diseases or conditions? How do they affect your daily life? Does one condition seem to outweigh the other? Do these conditions make the other worse?

How easy or difficult is it to talk with your doctor or nurse about your symptoms? Do you keep notes about your health condition or do you just try to remember? How long is it usually between visits to the doctor? Do you find that you have trouble answering questions when it’s been a long time between visits?

How would you feel about a personal health record tool to help you with your conditions? What should it be able to do? How would you use it? What do you think it would be important for your doctor to know about your symptoms and health behaviors, including your personal triggers (read ODLs)? Do you think it would be easy or difficult to keep track of these things?

The BreathEasy smart phone app
Do you use a cell phone? Is your cell phone a smart phone? Do you use apps? What do you like about your favorite apps? Does your phone have a virtual keyboard? Do you find it easy to use or would you prefer to use a physical keyboard?

What would you think about using a free smart phone app to collect and record your symptoms and health behaviors? What problems could you see with using a smart phone app this way? Would you report symptoms as they occurred, or at the end of the day?

Communicating with the doctors and nurses

How would you feel about your healthcare providers being able to see what you record between appointments? How would you feel about discussing the symptoms and health behaviors you recorded with your healthcare provider?  How do you think they would react to this type of system?

What’s next?
Once we hold the focus groups and gather the users’ inputs, we’ll being developing the BreathEasy tool. A subset of our focus group participants will then return in the fall to evaluate the prototype through some usability testing. More on that to come…

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!