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.

 

WIRED Health Conference: Living By Numbers

Katherine Kim, iN Touch Principal Investigator

What a privilege it was to attend the Wired Health Conference: Living By Numbers in New York City last week. Thanks, RWJF, for the invitation! Every talk offered something new, something surprising, or something provocative.

Something New

Nicholas Felton, a renowned graphic designer, talked about how he started producing the Feltron Personal Annual Report in 2006 because he wanted to tell the story of his life.  He evolved his process of data collection in three stages.  At first, he used “archeology,” leveraging data from records that already existed. These data included photographs, music downloads, subway rides. He found that 1% of his photos in 2006 included his cat. Next, he used “data hoarding,” collecting data expressly for the purpose of tracking.  During this two-year phase he collected every receipt and calendared obsessively. He became aware of how many “lethal doses of caffeine” he consumed in a year.  Now, he is “sampling” to help understand what he calls the intractable questions like what do I eat, how do I feel, who do I talk to, and what is my social network.  These data are difficult to collect constantly and often non-standard.  By analyzing free text comments through Mechanical Turk he discovered that he was 73% happy, or in his personal dictionary, “swell.”

Something Surprising

Nicholas Christakis of Harvard’s Human Nature Laboratory discussed social networks and how they can be more influential than mass media on people’s behavior.  His research on social networks related to obesity showed that it the condition was contagious: individuals whose immediate network included a friend, sibling, or spouse who became obese were more likely to become obese (57%, 40% and 37% respectively).  Even those who were one or two individuals removed were more likely to be obese. This was not the case for geographic neighbors.  This effect can also apply to positive health states.

Something Provocative

Jennifer Kurkoski and Brian Welle of Google’s human resources organization showed how asking big questions could lead to breakthroughs.  The question they asked was “What if working at Google added two years to your life?”  This led to their redesigning access to food on their campus from smaller plates in the cafes to placing M&Ms in opaque containers while putting healthier options in see-through bins.  Their early surveys are showing that employees like these changes and they are making healthier choices.

As we consider our next steps for iN Touch, I wonder: what if going to a high school with iN Touch added five years to a youth’s life? How could we evolve our approach to self-tracking of ODLs to identify the key signals?  And, what would a school need to leverage the social network that lives within it to make health contagious?

 

Learn more about the iN Touch project

Read more posts from the iN Touch group

Thoughts on Project HealthDesign at Health 2.0

Gail Casper, Deputy Director of Project HealthDesign

Although I was unable to attend several talks and demonstrations at the recent Health2.0 convention in San Francisco, I believe I had the “best seat in the house” while staffing the Project HealthDesign booth in the Exhibit Hall. Not only was I accompanied by the creators of the booth Joseph Pullen and Bob McKinnon of Galewill, I also had the opportunity to share time with several of the Project HealthDesign grantees and to talk with many of the Health2.0 participants who stopped by the booth. I was a bit surprised at the virtually constant flow of interested people stopping by, both during breaks and during sessions. 

Because our booth displayed a number of physical devices, many people first stopped by because they thought we were selling something.  But they stayed to learn more about our five projects, to view the devices they used and see the data displays created for both patients and clinicians. Matt Lee’s panel presentation on Monday generated considerable interest in the dwellSense project and the medication sensor; while others were intrigued more for the apps’ personal utility. People who had a newborn infant at home were particularly interested in the Estrellita app.

Others who stopped by were interested in learning more about Project HealthDesign in general and in exploring potential synergies with their own work.  The booth gave us a terrific opportunity to talk about Observations of Daily Living (ODLs) and to emphasize the importance of patient-centered data. 

Many people inquired about a next round of funding for Project HealthDesign.  Although disappointing to those who were asking, we appreciated the opportunity to let people know that Project HealthDesign will officially end in June, 2013.  While Project HealthDesign is coming to an end, we are confident that “our work” will continue, as more providers, developers and patients examine our project’s findings and build on our foundation. 

I would be remiss not to mention the grantees who so successfully represented their projects at the Health2.0 booth:

Matt Lee for dwellSense

Gillian Hayes and Sen Hirano for Estrellita

Lucia Rojas-Smith for BreathEasy

Kathy Kim and Christina Sabee for iN Touch

Marcos Athanasoulis and Nikolai Kirienko for Chronology.MD

Many thanks to all of them for the commitment of time, energy and intellect to this program.

New faces at the National Program Office

National Program Office

As summer comes to a close, the NPO bids farewell and best wishes to Libby Dowdall, who stepped down in August to pursue other ventures. 
And welcome to our new communications coordinator Wendy Swanberg,  Ph.D. candidate in Mass Communication at UW-Madison, and to student assistant Mahdu Rajendran,  UW-Madison sophomore studying biochemistry and math.  They’ll be working to move Project HealthDesign forward into 2013.  Please feel free to contact Wendy with any communication questions, ideas, and feedback on the PHD website.  And stay tuned for details on our upcoming Webinar set for Sep. 25th!

 

Alliance for Health Reform Briefing Featuring Project HealthDesign Today

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Tune in to C-SPAN 2 today at 12:15 p.m. EST (11:15 a.m. CST) for “A Different Way of Thinking About Health Information,” an Alliance for Health Reform briefing. The briefing will feature three Project HealthDesign panelists — Stephen Downs (Robert Wood Johnson Foundation), Stephen Rothemich (Project HealthDesign’s BreathEasy team; Virginia Commonwealth University), and Deven McGraw (Project HealthDesign’s Regulatory and Assurance Advisory Group; Center for Democracy & Technology) — as well as Joy Pritts (Office of the National Coordinator for Health IT).

The briefing will focus on Project HealthDesign's approach to health information and data and will also include challenges and promising practices from Project HealthDesign's BreathEasy team. Additional topics will include mobile health, safe transmission of patient-generated health data, and meaningful use. Learn more.

Update: Watch a recording of the briefing online at C-SPAN 2

ONC Webinar on Automating Blue Button Data Download

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Don’t miss ONC's upcoming webinar about developing standards and specifications for automating Blue Button data download. The webinar will be held Aug. 15 from 4-5 p.m. EST. Register for the webinar.

The Blue Button idea began when the Department of Veterans Affairs (VA) added a blue button to their patient portal (My HealtheVet) to allow users to download their health data. Since then, the idea has expanded and many health care provider groups and other organizations have signed on to allow their own patients to download health data via the Blue Button. This webinar is a first step toward automating the Blue Button  by developing standards and specifications that allow would allow users to not only download their health information, but also to automate the sending of that data from their health care providers to their personal health records (PHRs), email accounts, or other data repositories.

This event is a response to feedback from ONC’s recent Patient Access Summit, which was held in June. Learn more.

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.

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.

Snapshots from the Project HealthDesign Workshop

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Last week, we convened in Nashville, Tennessee for our final Project HealthDesign workshop. Since the program’s inception in 2006, facilitators at the Vanderbilt Center for Better Health have helped us hone our ideas and collaborate across teams. These workshops have also served as critical opportunities for building a program that’s more than the sum of the individual projects.

Our workshops typically include participants from each grantee team, our National Advisory Committee, Robert Wood Johnson Foundation, the National Program Office, and several consulting groups. During this workshop, however, we were also delighted to welcome several special guests who are thought leaders from AHRQ, NSF, ONC, Kaiser Permanente, Open mHealth and Vanderbilt University Department of Biomedical Informatics.

Each of our five current Project HealthDesign grantee teams has conducted a demonstration project in which patients with chronic diseases have actively and/or passively tracked observations of daily living (ODLs). The resulting data has provided feedback to patients as they self-manage their health outside of clinical visits and has informed clinicians as they engage in clinical decision-making processes. Each team has implemented a unique system and approach toward these ends. Most teams are in the process of wrapping up their interventions, but many have not completed their evaluations.

For a comprehensive scan of tweets from the workshop (collected via the #phdworkshop hashtag), be sure to visit the “Preliminary Report Out from Project HealthDesign Grants” Storify curated by RWJF’s Steve Downs. For a recap from one of our special guests, read Ted Eytan’s “A visit to Project HealthDesign and the patient voice, spoken through their observations of daily living.”

Read on for snapshots from the workshop:

iN Touch participants more interested in yesterday or today's data than reports that show trends over time. #phdworkshop

— Project HealthDesign (@PrjHealthDesign) April 25, 2012

#phdworkshop We KNEW workflow mattered in effective use of #ODL s but we didn't realize that there are TWO workflows - pts AND providers!

— Patti Brennan (@pattifbrennan) April 25, 2012

@PrjHealthDesign grantees enrolled lots of hard-to-engage patients with very modest incentives. Hmm. Learnings here. #phdworkshop

— Patrick McCabe (@PMcCabe_GYMR) April 25, 2012

#phdworkshop what an asthma dashboard might look like, pt dropping into the danger zone. twitter.com/tedeytan/statu…

— Ted Eytan, MD (@tedeytan) April 25, 2012

In the future how will IT change your physical and emotional health? The line between utopia and dystopia can b fuzzy #phdworkshop

— Lygeia Ricciardi (@Lygeia) April 26, 2012

#phdworkshop Health is what happens when you pay attention to your life

— Deven McGraw (@HealthPrivacy) April 26, 2012

Great examples of mobile and sensor data #odl improving health care at the #phdworkshop. Thx @stephenjdowns @pattifbrennan

— Matthew Lee (@mattllee) April 27, 2012

Do we need a Technology Activation Measure in addition to a Patient Activation Measure? (A question from #phdworkshop)

— SusannahFox (@SusannahFox) April 27, 2012