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!

HHS issues a plethora of important Health IT and privacy regulations

By Deven McGraw, Director, Health Privacy Project,Center for Democracy & Technology.

There have been some important developments this month related to the federal government’s efforts to encourage the adoption of electronic health records by providers (largely physicians and hospitals) and the use of those records to improve individual and population health.  Our first take on these long awaited rules is below.

Meaningful Use Criteria
On July 13, HHS released the final rules setting the requirements that providers must meet in order to be “meaningfully using” certified EHRs, which is the trigger for eligibility for federal Medicare and/or Medicaid subsidies beginning in 2011.  One rule establishes the requirements for meaningful use; another sets the criteria EHR technology must meet in order to certified. 

To engage patients in their health care, the criteria require providers to provide patients with electronic copies of their health information, upon request, within three business days.  Physicians also must provide patients with clinical summaries within three business days of an office visit.  The meaningful use criteria do not yet address the inclusion of patient-generated data like observations of daily living into EHRs – but discussions are underway to possibly include this in later stages of meaningful use (2013 and 2015).

Proposed Privacy and Security Regulation Changes to HIPAA
On July 14, the Department of Health and Human Services (HHS) published proposed regulations to implement changes to the privacy and security regulations under the Health Insurance Portability and Accountability Act (HIPAA).  Members of the public can submit comments on the regulations from now through September 13, 2010. A summary of the proposed HIPAA modifications has been prepared by Manatt.

The proposed rule includes provisions that further bolster a patient’s right to receive copies of his or her health information. For example, it clarifies an individual’s right to request and receive a readable, electronic copy of his or her health information when the information is kept by the provider in electronic form.  The proposed rule also provides some additional details on an individual’s right to have that electronic copy sent directly to another individual or entity, such as a personal health record (PHR). But, it does not require that the electronic copy be computable; it also does not require providers to have an interface with every PHR on the market (so it may not always be possible for patients to have their information sent directly to the PHR of their choice).  However, this provision is viewed by many as an important first step to achieving more robust exchange of computable data between patients and their providers, and the hope (and expectation) is that the EHR and PHR marketplace will respond to this new opportunity.

But perhaps of more interest to users of PHRs is what was not in the proposed HIPAA rules: clarity on when PHRs are covered by HIPAA.  HITECH and the proposed rule state that a PHR is only covered by HIPAA if it is offered to individuals “on behalf of a covered entity.” (In such a case, the PHR is a “business associate” of the covered entity.)  The proposed rule unfortunately provides no guidance as to when a PHR is offered “on behalf of” a physician or hospital, and when it is offered independently.  This distinction is critical, as those PHRs that are covered by HIPAA are potentially permitted by law to access, use and disclose an individual’s health information without necessarily getting the individual’s consent .

A representative from the HHS Office of Civil Rights (OCR), which wrote the proposed rule and is tasked with enforcing it, recently clarified in a public forum that mere existence of a contract or interface between the PHR and the covered entity does not mean that the PHR is being offered “on behalf of a covered entity.”  Instead, OCR would look at the facts and circumstances of the arrangement between the PHR and the covered entity to determine whether or not the PHR was being offered to patients independently or on the covered entity’s behalf.  This confirms the approach used by the consultancy team at Manatt when they were analyzing the use of PHRs in Project HealthDesign and concluded that the PHRs were not covered by HIPAA.  CDT intends to submit comments to the proposed rule to urge OCR to issue more official guidance setting forth the factors it will use to analyze PHR/covered entity arrangements to provide more clarity to consumers, providers, and companies offering PHRs.

Preserving trust while diversifying platforms

By Patricia Flatley Brennan, Director, Project HealthDesign.

I've been in several meetings over the last few days and the message continues to come LOUD and clear: it's not your old EHR.  Single vendor, shrink-wrapped, fully-integrated electronic health records are slowly giving way to a health IT ecosystem characterized by apps and more apps, everywhere.  Good or bad, highly distributed information tools, residing on platforms as different as the smartphone in your pocket to the smartwall in the ER, are slowly but surely taking over the clinical care environment.

What remains unchanged, however, is the need for clinicians and patients to be able to trust the tools human life rests on. Clinicians need to know that the clinical data - lab tests, histories, vital signs - presented to them about a specific person did indeed originate in that individual. Prescribers need to know that drug calculations are preformed correctly by the apps offered to do so.  Data from a PHR must be a trustable report of a patient's every day experience.

Who is responsible for insuring this chain of trust? In the 'old' days of 2009, the contract between the health IT vendor and the purchasing hospital incorporated language indemnifying or holding harmless any user of the system. But now, in this era of apps and platforms, there are many vendors, many clinical users, and many data sources.  Trust is an essential component of effective clinical information management - how can we preserve the trust while we diversify the platforms?

What the Common Platform has taught us

By Sam Faus, Sujansky & Associates, LLC, Developers of the Project HealthDesign Common Platform.

The Project HealthDesign Common Platform was developed in order to support the requirements of the nine 2006-2008 grantees to facilitate the development of innovative Personal Health Applications (PHAs) and to promote the sharing of observations of daily living (ODLs) between these PHAs. Using a standard and open SOAP-based web service the personal health data repository allows for the cloud-based storage, access and management of personal health data elements, including ODLs and medication list data.

What the Common Platform has taught us so far:

1. The strength of the Common Platform lies in the partnerships that it allows between the sources of personal health data and applications that can then access that data. This enables patient data sharing and allows for meaningful visualizations and interpretations.
   
2. The Common Platform allowed the 2006-2008 projects to validate that personal health data can be useful without being strictly clinical. Allowing for input of observations of daily living that aren’t traditionally part of classically defined health information makes the personal health record more meaningful to the person and can provide providers insights into their care.
   
3. You can capture meaningful observations in daily living without an overly large set of common data types. The Common Platform allows for entry of defined observations of daily living, like food intake, but also has the flexibility to input undefined information, like blood glucose levels.

Sam Faus, is presenting The Project HealthDesign Common Platform: Enabling Innovative Uses of Health Data by Personal Health Applications at the O’Reilly Open Source Convention this week. We’ll post video of his talk when it’s available.

To learn more about the Common Platform visit the website.

Strengthening Parent-Infant Bonds

By Karen Cheng, Charles Drew University, FitBaby Principal Investigator.

Read all of the FitBaby blog posts.

To watch a parent care for a high-risk infant is like watching someone do the impossible: frequent feedings with special formulas and/or g-tubes, administering a slew of medications, endless doctor’s appointments.  All this while trying to care for other kids, and if time permits, maintain one’s personal relationships and health. 

For many parents of high-risk infants, these tasks can get in the way of bonding with the infants. 

The families come out [of the Neonatal Intensive Care Unit] and they don’t have a normal relationship with their baby.... They’re struggling with having a child who is ultra-fragile….  so they don’t normalize their life…. this child is treated one way and other children are treated a different way…
            -  Clinician 1 from  Early Developmental Assessment Center

In response to this concern, we are considering ways to use technology to help focus parents’ attention on  bonding with their infants.  For example, giving daily reminders to parents at the end of each day might encourage them to relax and spend a few quiet minutes with their babies: talking, singing, reading, and so on. These reminders can also prompt parents to record whether they have been doing these activities.  We can then show the data on these daily activities to parents through their phones and hopefully encourage them to keep doing these behaviors.  Our hope is that FitBaby not only uses observations of daily living to improve the care and communication between caregivers and health care providers but can help parents set aside time each day to just enjoy being with, and bonding with, their child.

What if I don’t want to know?

Motivation for tracking ODLs

By Christina Sabee, PhD, Co-PI, San Francisco State University

At the Crossroads

In a recent meeting with our youth advisory board, we talked with 5 youth about using an iPod Touch to record observations about their daily life.  Specifically, we talked about using a picture diary of the food that they eat throughout the day. 
“I don’t know if I’d want to do that,” expressed one of the youth.  “Would we have to take a picture of everything?” asked another.  Their concerns reminded me of my own experience with recording the food that I was eating throughout the day. 
Tracking food is a great way for us to learn more about our eating habits.  These diaries can help reveal eating patterns, keep us involved in our habits, and provide accurate visual information for our health care providers. 
But when I experimented with tracking my own food intake, I was disturbed at how emotionally difficult it was.  I think of myself as a relatively healthy eater.  My BMI is within the normal range.  But taking a picture of everything I was eating throughout the day seemed intrusive – even though I wasn’t sharing it with anyone!  I found myself feeling proud to take a picture of the healthy bowl of oatmeal and fruit that I ate for breakfast, but guilty and embarrassed about documenting the two cookies I had in the afternoon.  And later in the week when I was running late and wanted to order pizza for dinner, I felt myself questioning my identity as a good parent who serves healthy meals to her children.  

Personal Choices

So what if I had to report this information to someone else?  I know that the cookies and the pizza aren’t the healthiest choices.  I know I shouldn’t drink excessive coffee, even when I have a deadline.  But I do it anyway.  When asked the question “would we have to send the reports to the doctor?” about the picture diary, I began to wonder about the potential for deception, the potential for guilty feelings.  Would participants in our study feel compelled to “cheat” in their diaries so as not to be reprimanded for poor eating habits?  Would the need for positive feedback outweigh the ethics of honesty?  Sometimes, being honest with ourselves is the most difficult part of changing our lifestyles.

Motivating Strategies

This is where it becomes really important to both examine the motivating strategies that we use to encourage our participants to track their food intake and couple that with a gentle, non-patronizing counsel from their health coach.  Our team is working diligently on the approach that we take to bring our participants into a conversation about their health and eating habits that looks entirely different from the lectures they might imagine about following the food pyramid.  The health coaching model that our project is using is a major step toward empowering youth, with support, to manage the integrity needed to truly make a change in their lives – one that they (as opposed to their parents or doctors) choose to make.