If Specificity Is the Solution, ODLs Are Key

Sara Koliner, Policy Analysis Project Assistant, Project HealthDesign National Program Office

Mobile apps have proven to be valuable tools for collecting ODLS in this last round of Project HealthDesign. While the benefits are clear, however, creators of mobile apps must contend with a complicated interplay of safety, cost, usability, and accessibility in order to produce high quality software. Weakening these foundations can lead to misuse by consumers, or rejection by practitioners. On the other hand, overabundance of requirements can stall progress and hinder the utility of these applications.

A few weeks ago, the Healthcare Information and Management Systems Society (HIMSS) held its 13^th annual conference in New Orleans, LA. In one notable e-session, presenters Katharina Steininger and David Rückel outlined the values of key stakeholders in mobile health applications, and thus the priorities that should be used in applications themselves. A copy of their slideshow is available here.

In “Mobile Health Applications—Strategic Stakeholders’ Perspectives,” Steininger and Rückel name key stakeholders in mobile health applications: patients, practitioners in private practices, emergency medical services and mobile homecare, hospitals and nursing homes, application developers, and statutory and private health insurances. While the stakeholders often have common aims such as higher quality care and improved security, their priorities are unique and often contradictory.

The solution here is specificity: choose your stakeholders, and this will define your priorities. While the presenters describe doctor-to-patient and doctor-to-doctor style applications, they leave out the most relevant setting: patient-to-doctor communication.

Project HealthDesign teams inherently centered themselves around patients by designing mobile apps to use the data that embodies specificity: ODLs. By incorporating Observations of Daily Living, developers automatically look to the values of patients, and so produce a more effective application. Applications like BreathEasy even provided a separate dashboard for clinicians, allowing both the smartphone and computer-based portals to serve the exact needs of targeted users.

A final note on the importance of specificity: On Tuesday, March 19, the Energy and Commerce Committee hosted a hearing regarding the regulation of mobile health applications. In view of whether mobile health applications should be considered medical devices, gray areas indeed exist in applications that intend to replace monitors already used in the clinical setting. Applications dedicated to the capture of ODLs, on the other hand, add entirely unique patient-defined and patient-generated data to the workflow. The specifically non-clinical nature of ODLS requires a different framing of the quality question—one that addresses both the reliability from the patient’s perspective and accountability on the part of the clinicians. If quality standards are to be applied to this type of mobile app, they will have to be quite different from the standards currently used for clinical care metrics: if not necessarily relaxed, they must account for the idiosyncrasies of data shaped at the level of the individual.

Ingenuity and flexibility are essential to the development of quality mobile applications. As long as developers remain keyed into the patient perspective, they should be encouraged to use these faculties as effectively as possible.

Read more posts about legal and policy issues

HHS Issues Request for Information; Asks for Strategies to Increase Patient Engagement

 Robert D. Belfort,  Manatt, Phelps & Phillips, LLP, Proje­ct HealthDesign Regulatory and Assurance Advisory Group

On March 6, 2013, the U.S. Department of Health and Human Services (HHS) issued a news release announcing its 2013 agenda to bring down costs and improve quality of care through implementation of health information technology.  Specifically, the new release introduced HHS’s latest plan to “accelerate health information exchange (HIE) and build a seamless and secure flow of information essential to transforming the health care system.”  In the release, HHS indicated it will, among other things:

• Set aggressive goals for 2013: HHS is setting the goal of having 50 percent of physician offices using electronic health records (EHRs) and 80 percent of eligible hospitals receiving meaningful use incentive payments by the end of 2013.
• Increase the emphasis on interoperability: HHS will increase its emphasis on ensuring electronic exchange across providers.  It has started that effort by issuing a request for information (RFI) seeking public input about a variety of policies that will strengthen the business case for electronic exchange across providers to ensure patients’ health information will follow them seamlessly and securely wherever they access care.
• Enhance the effective use of electronic health records through initiatives like the Blue Button initiative.  Medicare beneficiaries can access their full Medicare records online today. HHS is working with the Veterans Administration and more than 450 different organizations to make health care information available to patients and health plan members.  HHS is also encouraging Medicare Advantage plans to expand the use of Blue Button to provide beneficiaries with one-click secure access to their health information.
• Implement Meaningful Use Stage 2:  HHS is implementing rules that define what data must be able to be exchanged between Health IT systems, including how data will be structured and coded so that providers will have one uniform way to format and securely send data.

      In its Request For Information (RFI), HHS requested feedback from the public on various ways to accelerate electronic HIE.  One of the RFI’s focus areas is consumer and patient engagement.  According to the RFI, “CMS wants to encourage beneficiary engagement in their care through improved beneficiary access to their personal health information and better electronic communication between beneficiaries and their health care team. There are several ways CMS could encourage beneficiary access to their information through the use of new measures or patient-reported care experiences, new technology tools, and new financial models.”  The specific options that CMS holds out as examples in the RFI are:

1. Incorporating new measures into Medicare Advantage Program consumer assessment surveys (CAHPS);
2. Blue Button availability to all CMS beneficiaries;
3. Payment and service delivery model testing under the Affordable Care Act, such as demonstration of incentives for consumers to more actively participate in their health; and
4. Direct access to lab results from laboratories.

CMS posed the following specific question in the RFI:  “What CMS and ONC policies and programs would most impact patient access and use of their electronic health information in the management of their care and health? How should CMS and ONC develop, refine and/or implement policies and program to maximize beneficiary access to their health information and engagement in their care?”

What are the lessons we have learned from Project HealthDesign that should be brought to bear on this question?  Post them below or submit comments directly to ONC.  The RFI can be accessed here  http://www.ofr.gov/OFRUpload/OFRData/2013-05266_PI.pdf

Read more posts about legal and policy issues

BreathEasy goes to the mHealth Summit

Barbara L. Massoudi, MPH, PhD, BreathEasy Principal Investigator

I recently presented the BreathEasy project at the mHealth Summit, sponsored by HIMSS, as part of a panel on Pulmonary Disease Management. In addition to BreathEasy, one of the other panelists presented on asthma – the M-CHESS project at the University of Wisconsin, Madison. M-CHESS is part of a larger study, The Center for Health Enhancement Systems Studies (CHESS), with a goal to optimize individuals' health behaviors, quality of life, and access to services through research and development of innovative health systems.

Like BreathEasy, M-CHESS was focused on self-management of asthma in inner-city patients using a smartphone. M-CHESS recruited 218 teens and randomized them to two groups – experimental, and control for a study period of 12 months, and then a follow-up of 12 months. All participants were provided with smartphones; the experimental group also received access to the M-CHESS interface, featuring an interactive, Internet-based asthma education program, peer support mechanisms and automated reminders for asthma control medicines and data collection. Researchers used the Asthma Control Test (ACT) to measure how well an individual’s asthma symptoms are being managed. Initial analysis shows a significant effect of M-CHESS on the change in ACT scores across the first 60 days on study (p=.011). On average, the M-CHESS group showed a 2% improvement in ACT score per day of study over the control group. Ongoing analysis will examine whether the drop-off in improvement of symptom control is related to a decline in use of the M-CHESS application and attempt to identify specific subgroups for which M-CHESS may provide the greatest benefit in asthma symptom control.

The two other panelists presented on tuberculosis (TB) projects. The University of San Diego presented on a project that used mobile phones for conducting directly observed therapy via video upload (VDOT) in the US and Mexico. Overall, patients liked using the phone to upload videos, and the compliance rate with timely uploads was high. VDOT represents an additional option to resource intensive traditional, in-person DOT.

Researchers from the University of Utah presented on their TextTB randomized control pilot study which looked at the acceptance and feasibility of a patient-driven mobile phone intervention to support TB treatment adherence in Argentina. Patients were asked to text in when they had taken their medication. Overall, adherence and acceptability of the intervention was relatively high, but mobile phone feasibility issues such as lost messages, modem issues, and running out of SMS credits caused some difficulties for some participants. Further research is needed to evaluate the potential for this method of reporting once these issues have been addressed.

Overall, the panel was very interesting – with findings from all participants providing valuable lessons for future work in mobile health apps. Next, we’ll report on our attendance at the Health IT for the Underserved Conference.

 

** The mHealth Summit research sessions are archived here – scroll down to Wednesday, December 5, “Pulmonary Disease Management.” Barbara Massoudi’s presentation begins about 50 minutes in.

 

Learn more about BreathEasy.
Read more posts from the BreathEasy team.

 

Project HealthDesign's new video series: Conversations with e-PatientDave

Project HealthDesign has long advocated for imagining personal health records as patient-centered records, and for including the patient's voice in the health care conversation. One of the more intriguing patient "voices" belongs to Dave deBronkart, better known as "ePatient Dave."

For those who don't know him, Dave deBronkart survived Stage IV kidney cancer, and he credits his survival to the vast store of patient knowledge he discovered after his diagnosis. Since his recovery, Dave has been a tireless champion of patients and patients' rights. (He writes a regular blog: e-PatientDave, A Voice of Patient Engagement). In February, Project HealthDesign met with Dave for a lengthy interview -- about everything from the value of patient insight, to the power of raw data, to the insights gained by those who have come close to dying.  

Over the next three months, as Project HealthDesign winds to a close, we'll be posting pieces of our interview with this remarkable and energetic man. Here is the first installment, Envisioning the Patient-Centered EHR.