Mobile Device Studies: Tips for Maintaining the Project Manager’s Sanity

Rita Sembajwe, BreathEasy Project Manager, and Barbara Massoudi, BreathEasy Principal Investigator

Research studies and other projects utilizing mobile devices frequently experience specific challenges related to mobile accounts and billing. As part of Project HealthDesign’s BreathEasy study, RTI International obtained smartphones and service plans for the 30 participants and several spare phones for project staff. We’d like to share a few tips for others undertaking research with mobile devices:

Cancellation Fees
Mobile phone service contracts typically include a set term of service, often a period of 24 months. Many research projects don’t run the full length of the contract period, leaving researchers to pay cancellation fees for the accounts at the end of the study. Our provider included fees at a flat market fee of $325, which was discounted by $10 for every month of service already paid through the contract. Multiply this amount by 30+ phones, and the project would pay thousands of dollars in cancellation fees. What’s the solution? Try to negotiate cancellation fees up front as you bargain with multiple service providers. Mobile service providers often say that their cancellation fees are the one thing they cannot negotiate, but it may be possible to negotiate these fees at the corporate level, rather than the project or individual account level.  Negotiating cancellation fees at the corporate level will benefit any project conducted under your organization’s corporate agreement. You could also get your service provider to approve a transfer fee waiver for accounts being transferred to participants after the end of the study or to other research projects within your organization. An organizational registry of current and upcoming projects using mobile devices could help facilitate these types of contract transfers.

Service Provider Support Issues
The phones we purchased for the BreathEasy project were supposed to have been unlocked at purchase to allow us to easily download the BreathEasy application, but this was not the case when we received the phones.  It ended up taking several weeks of working with the service provider to unlock the phones, and even then we sometimes had to research workarounds to get the BreathEasy app on the phones. This issue cost the project unanticipated labor and contributed to a delay in field activities. So what’s the solution? Projects involving mobile devices should get assurance from the service provider that all devices will allow third-party applications to be downloaded. If you include this stipulation in your contract, the burden of unlocking the phones will be on the service provider, not on your project staff.

Billing Issues
For several months, we experienced problems getting the mobile service invoices routed to the correct project within our organization. At times, our project was billed for mobile service accounts that didn’t belong to us. Other times, overage charges and reimbursements from the mobile service providers didn’t reach us until months later. A good solution would be to ask your service provider to move your project’s service charges to its own sub-account (called a billing account number, or “BAN”). This allows the service provider to directly assign all bills to the project’s account number, eliminating the need for manual routing of phone invoices within an organization.

We hope these tips assist you when planning and conducting your next research study using mobile devices.

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

Key Points from the Meaningful Use Workgroup Patient-generated Data Hearing

Deven McGraw, Proje­ct HealthDesign Regulatory and Assurance Advisory Group, Center for Democracy & Technology

On June 8, the Meaningful Use Workgroup of the federal Health IT Policy Committee held a hearing on patient-generated data. The purpose of the hearing was to inform the Workgroup’s consideration of possible objectives for Stage 3 of CMS’ incentive program for the meaningful use of EHRs.. Since Stage 1 of the program, the Policy Committee has signaled its interest in including patient-generated data as part of Stage 3.

Project HealthDesign was well represented at the hearing. The Workgroup heard testimony from Nikolai Kirenko, Chronology.MD co-project director and Patricia Flatley Brennan, Project HealthDesign national program director. I testified on behalf of Project HealthDesign’s regulatory and assurance advisory group.

Some of the key points of the hearing were:

• The term “patient-generated data” encompasses many different types of data, from device and sensor data (e.g., blood glucose levels or data from a pacemaker), to patient-reported data used to assess health care quality, to observations of daily living (ODLs) used by patients for better self-management and to inform their clinical care. Developing effective Meaningful Use measures and objectives that involve patient-generated data will likely require a range of approaches.

• Some high-performing health systems are already deploying models of care that include patient-generated data (including the Veterans Administration, Dartmouth, Geisinger, Partners, and the institutions participating in Project HealthDesign). However, getting other institutions and smaller ambulatory practices to adopt care models that incorporate patient-generated data may require starting with more modest, manageable steps. The objectives set for Stage 3 of Meaningful Use also should provide the foundation for adoption of more robust, patient-centered care models after the HITECH incentives have ended.

• Patient-generated data need not come directly into the provider’s EHR in order for it to be effectively utilized as part of patient care. Decisions about what to include in the EHR should preserve the role of the record in documenting and supporting clinical decision-making processes.

• Organizations that have successfully incorporated patient-generated data into clinical care have done so in accordance with specific plans. These plans document agreements between patients and clinicians about  what information will be collected and how it will be used. Consequently, Meaningful Use objectives for patient-generated data will need to be structured in a way that provides flexibility for providers and patients to come up with a plan that works for their circumstances. Dr. Brennan recommended that the Meaningful Use Workgroup focus on “providing assistance, incentives, and structures” that will enable clinicians to have a way to document their use of patient-generated data in clinical decision-making.

Read the written testimonies submitted for the hearing. 

The Meaningful Use Workgroup will be working over the summer to develop more specific recommendations on how to incorporate patient-generated data into Stage 3 of Meaningful Use, and members of the public are invited to participate in Workgroup calls. Learn more. 

Project HealthDesign and Patient-generated Data [Video]

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Throughout Project HealthDesign’s history, our grantee teams have worked closely with patients in order to explore the potential of personal health records (PHRs) and personal health data. As our first nine teams worked on their projects, they listened closely to patients and began hearing patients describe their health in idiosyncratic ways. Their work led to the recognition of observations of daily living (ODLs) — information about an individual’s life that is both patient-defined and patient-generated.

Project HealthDesign's five most recent grantee teams have carried this vision forward by designing five different technical systems that allow patients to track their ODL data. In these projects, patient participants have tracked a variety of ODLs, from daily activity and stress levels to socializing and moods.

But ODLs are just one type of patient-generated data. Other types include traditional patient-reported information about signs and symptoms (e.g., blood pressure, blood glucose), sensor data, patient preference data, and patient-reported quality assessment data.

We’ve been excited to see interest in patient-generated data grow throughout the course of the program. This month, Patricia Flatley Brennan, Project HealthDesign national program director, testified before the HIT Policy Committee’s Meaningful Use and Quality Measures Workgroups and the HIT Standards Committee’s Consumer Engagement Power Team at their Patient-generated Data Hearing. (Listen to an audio recording of the hearing.)

“Patient-defined, patient-generated data can be incredibly important in helping to understand the care process of individuals,” said Dr. Brennan. Watch the video below to learn more about Project HealthDesign’s outlook on patient-generated data.

Project HealthDesign at AcademyHealth’s 2012 Annual Research Meeting

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Two Project HealthDesign principal investigators will join other health services researchers at AcademyHealth’s 2012 Annual Research Meeting. The event will be held June 24-26 in Orlando, Florida. iN Touch Co-Principal Investigator Katherine Kim, M.P.H., MBA, and BreathEasy Co-Principal Investigator Barbara Massoudi, M.P.H., Ph.D., will give podium presentations during the Consumer Informatics and Mobile Health panel on Sunday, June 24 from 9-10:30 a.m. EST.

Kim will present an abstract titled "iNTouch: Impact of a Mobile App for Overweight and Obese Youth.” Co-authors include Christina Sabee, iN Touch co-principal investigator; Holly Logan, iN Touch project manager; and Janelle Charles, iN Touch research assistant. The iN Touch team is based out of San Francisco State University’s Health Equity Institute.

Massoudi will present an abstract titled “Project HealthDesign's BreathEasy: A Personal Health Application for Adults with Asthma.” Stephen Rothemich, M.D., BreathEasy co-principal investigator is co-author. The BreathEasy team is a cooperative effort of RTI International and Virgina Commonwealth University.

Other panelists for this session will include Changmi Jung, a Ph.D. candidate at Carnegie Mellon University, and Stephanie Shimada, Ph.D., a research health scientist at Bedford VA Medical Center.

Learn more about AcademyHealth’s 2012 Annual Research Meeting.

Read past posts from the BreathEasy team.
Read past posts from the iN Touch team.

Project HealthDesign at Nursing Informatics 2012

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Whether you’ll be attending the 11th International Congress on Nursing Informatics in person or watching the webcast from afar, keep an eye out for Project HealthDesign at NI 2012. Patricia Flatley Brennan, Project HealthDesign national program director, will give the closing keynote presentation on Wednesday, June 27 at 10: 30 a.m. EST. Uba Backonja, Project HealthDesign researcher, will present a paper titled “Observations of Daily Living: Putting the "Personal" in Personal Health Record” on Tuesday, June 26 at 10:30 a.m. EST. Co-authors include Kathy Kim, iN Touch principal investigator; Gail Casper, Project HealthDesign deputy director; Tim Patton, Project HealthDesign researcher; Edmond Ramly, Project HealthDesign researcher; and Patricia Flatley Brennan. The conference runs June 23-27 in Montreal, and attracts nurse informaticists as well as others interested in health IT. 

Learn more about NI 2012.
Follow the backchannel on Twitter at #imiani2012.

HHS’ Office for Civil Rights Issues Memo on Patients’ Right to Access Medical Records

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Last week, during the Patient Access to Data Summit, HHS’ Office for Civil Rights (OCR) released a memo and video that aim to help patients understand their legal right to access their own health information.

The memo, a message from Leon Rodriguez, director of OCR, affirms the importance of patient access for medical records “so that [patients] can track their progress through wellness programs, monitor chronic conditions, communicate with their treatment teams, and adhere to their important treatment plans.” The memo also documents patients’ rights to see and obtain copies of health records and to express a preference for electronic or paper copies when both are available. OCR encourages patients to print the memo and take it with them when requesting their health information from a covered entity, like a hospital, doctor, or other health care provider.

OCR has also made additional resources on this topic available to consumers:

• Download the “Your Health Information Privacy Rights” brochure.
• Learn more about patients’ rights to access their medical records.
• Learn how to file a complaint with OCR if you think your health information privacy rights have been violated.

Read more posts about legal and policy issues.

Project HealthDesign Director Testifies at Meaningful Use Workgroup Hearing

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Today, Patricia Flatley Brennan, R.N., Ph.D., Project HealthDesign national program director, and Nikolai Kirienko, co-project director for Project HealthDesign’s Chronology.MD team, will testify at a hearing on the incorporation of patient-generated information to manage health. This hearing is organized by the Meaningful Use Workgroup of the HIT Policy Committee.

Brennan has been invited to testify on the business and technology of patient-generated data and its use in clinical care. Her written testimony (pdf) draws upon the experiences of all fourteen Project HealthDesign teams throughout the program’s two rounds of funding, as well as the teams’ interactions with hundreds of patients. However, she will focus mainly on stories and findings from Project HealthDesign’s five current teams.

Brennan’s testimony will focus on three main points:

1. We need to expand the idea of patient-generated data to include patient-defined data.
2. Sharing patient-defined data with clinicians improves the business of health care.
3. Existing technologies are adequate but not optimal for the clinical integration of patient-defined and patient-generated data.

Kirienko will draw upon the experiences of Project HealthDesign’s Chronology.MD team; he will also speak as an advocate for patient engagement in health and health care. His testimony will focus on the need for patient access to open APIs in the EHR and the need for standards for dynamic patient engagement on mobile devices.

Paul Tang, M.D., Project HealthDesign National Advisory Committee chair, co-chairs the Meaningful Use Workgroup, and Deven McGraw, J.D., M.P.H., a member of Project HealthDesign’s regulatory and assurance advisory group, is also a member of the Workgroup.

Listen to the webcast.
Read more policy-related posts.