Latest Health IT Policy Developments

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

A new year has started — year two of the incentive program to encourage the meaningful use of certified electronic health record technology to improve individual and population health. It’s a good time to get caught up on policy developments from the end of a very busy 2011 and provide an update on expected developments in early 2012.

On November 7, the Institute of Medicine issued a report and recommendations intended to assure the safety of EHRs. The report identifies some safety risks associated with EHRs and acknowledges the potential for safety benefits. The report also recommends the establishment of a new entity to investigate EHR safety risks and urges HHS to establish a mechanism for vendors and others to report safety-related incidents. In response to the report, ONC noted it is already in the process of developing an EHR safety and surveillance plan.

In December, the Department of Health & Human Services (HHS) announced that providers who started participating in the  meaningful use incentive program in the first year (2011) will have an additional year (until 2014) before being required to meet the more robust meaningful use Stage 2 requirements. This change, which was initially recommended by the Health IT Policy Committee, is intended to give providers a longer period of time to adjust to and implement the earliest stage of meaningful use before being required to demonstrate more robust use and exchange of health information in Stage 2.

Speaking of meaningful use, the proposed meaningful use requirements for Stage 2 are still expected to be released early in 2012. In addition, the Health IT Policy Committee has begun discussions about requirements for Stage 3, and incorporation of patient-generated data into EHRs continues to be a priority.

ONC unveiled its consumer engagement program in September, and the office is continuing to roll out initiatives to promote consumers’ use of e-health tools to improve their health:

• Earlier this month, ONC announced the Healthy New Year video challenge intended to collect short (up to two minutes) videos from consumers sharing their new year’s resolutions for the use of e-health tools to improve their health or the health of their families. The deadline to submit a video is February 16, at 5 p.m. EST. Cash prizes will be awarded to the top videos.

• On December 6, the Office of the Surgeon General and ONC launched a Healthy Apps Challenge to encourage the development and submission of technology apps that tailor health information to the needs of the consumer user and empower the public to regularly engage in and enjoy health-promoting behaviors. The deadline for entry was December 31, 2011. Winners will be announced on January 31, 2012 and finalist apps will be featured on an HHS website.

ONC also has launched efforts to gather more information about consumer concerns about e-health privacy and security. Specifically, ONC is surveying consumers (and conducting focus groups) about attitudes and preferences regarding the communication of personal health information using mobile devices. In addition, ONC will conduct annual, nationwide surveys to assess the percentage of individuals who are concerned about the privacy and security of EHRs, who report having kept any part of their medical history from their doctors due to privacy concerns, and who are concerned that an unauthorized person would see their medical information if it is sent electronically, among other key measures. ONC will assess trends in consumer privacy and security views between 2012 and 2016 and intends to compile the results into a final report.

Stay tuned for further updates.

Read more posts about legal and policy issues.

Onward, HealthVault (and Others!)

Patricia Flatley Brennan, Ph.D., R.N., Project HealthDesign National Program Director

In June, as soon as Google mentioned its plan to discontinue the Google Health personal health record (PHR) platform, speculators began wondering whether Microsoft HealthVault would eventually follow suit. And once Microsoft and GE announced plans to spin their health groups into a new joint venture, the questions began to flow even more freely:

“It remains to be seen whether HealthVault will follow the Google Health PHR into oblivion.”
- “Microsoft GE Healthcare Joint Venture – A Sign of Weakness or Strength?,” The Health Care Blog

“… Microsoft did state that they’ll hang onto HealthVault, but even here, that is more likely a by-product of no one wanting to take on HealthVault rather than Microsoft’s strong desire to continue to try and build a viable, revenue-generating entity out of it. Do not be too surprised if, in a year’s time, HealthVault falls to the wayside much like Google Health did this year.”
- “Microsoft Bows Out of the Clinical Market,” Chilmark Research

In response, the HealthVault team met the questions head-on by holding their first “State of the Union” webinar on Jan. 13. The webinar, which was open to the public, focused on the HealthVault team’s vision for 2012, including plans for establishing a critical mass of users. Sean Nolan, chief architect of Microsoft’s Health Solutions Group, emphasized the team’s desire to see “people worldwide using online health tools to change health care.”

Several of our current Project HealthDesign teams are using HealthVault as a data repository and platform for participants to access their observations of daily living (ODLs) and other patient-generated data. That’s why we were interested to see where the HealthVault team would be focusing in the immediate future. Our teams have benefited from building on top of existing personal health platforms like HealthVault and TheCarrot.com. And although we don’t see these platforms as ends unto themselves, but rather as important components of a health data ecosystem (one that includes sensors and apps to record patient-generated data, personal health platforms to store and manage the data, dashboards and apps to review the data, and clinical EHR systems to bring data from patients’ daily lives into the clinical environment), there remains a critical and important role for platforms that accept and expose data from many sources.

We want to encourage everyone who’s working to advance this suite of health information tools, including HealthVault and TheCarrot.com, to hang in there. We know you’re ready to see more widespread interest and higher rates of consumer adoption. Frankly, we think the time for personal health platforms and a whole range of additional personal health tools is coming. We can’t wait to see consumers take charge of their health outside of clinical visits by diving into the health data ecosystem and putting the great tools you’re developing to work. Onward!

Recruitment Issues

Anind Dey, Ph.D., dwellSense Principal Investigator, Carnegie Mellon University

Throughout our project, we have had issues with recruiting subjects for our study. Our goal was to recruit 30 elders, along with their caregivers and doctors. However, we have struggled to recruit 20 subjects. There are a number of possible reasons for this. Some are due to not being targeted enough in recruiting, and some are due to not having enough constraints. To perform our study, we require a great deal of access to subjects and their apartments in order to perform assessments, to regularly check the state of the display and sensors, and to replace batteries.

From a time and manpower perspective, we needed to recruit subjects within a small geographic area. Otherwise, the commute time to and from our participants' apartments would have been unmanageable. So, we made a choice to identify a small number of locations from which to recruit subjects. That drastically limited our subject pool, but having subjects spread around the city would have reduced the number of subjects we could have actually worked with, too. It was not easy to identify the potential locations or potential subject populations centered in an area, particularly because we weren't looking for individuals with particular disabilities or diseases. Instead, we were looking for elders who were "at risk" but not necessarily exhibiting signs of cognitive decline.

Once we found suitable locations with large potential subject pools, we faced other difficulties in recruiting. One issue was the amount of time we wanted participants to commit to being part of our study. Because we expect the personal health information we collect via sensors to provide value over time rather than immediately, and because we wanted enough time for participants to get over the novelty factor of our embedded assessment appliances and displays, we needed participants to commit for several months. Many potential subjects had a hard time making this long-term commitment.

We also wanted to maximize the number of assessments we could make for each participant. This meant we were looking for subjects who regularly perform the three activities we monitor: coffee making, making/receiving phone calls, and taking medicine. Some potential subjects didn't work out because they drank tea instead of coffee, or made instant coffee rather than using a coffee maker. These activities, though perfectly reasonable, made them inappropriate for our study. Others had digital phone lines that were not compatible with our phone sensing hardware, which works with analog phone lines. Furthermore, some took pills from the original pill bottles rather than from pill boxes. We were afraid that changing someone's habits (from using pill bottles to using pill boxes) would impact their behavior too much and introduce errors in actions, so we removed these individuals from the potential subject pool. In the end, we chose to accept subjects if they used pill boxes and satisfied the requirement for either the coffee making or the phone use.

Further complications arose from the nature of the research itself. When they heard our description of the study, some subjects declined to participate. When asked why, it was clear that participating in such a study and using such a system that tracks and represents health information served as another reminder of their declining physical and/or cognitive health. The last thing they wanted was a "constant" notification of how they were performing everyday activities.

We are continuing to recruit subjects, but this is a slower process than we had expected. We’ve definitely learned a lot about recruiting for this type of study.

Learn more about the dwellSense project.
Read more posts from the dwellSense team.

Creative Commons photo by jcestnik.

Project HealthDesign Director Shares Views on Patient Engagement in InformationWeek

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Head over to InformationWeek today to read “Is 2012 the year of online patients?,” which features insights from Project HealthDesign Director Patricia Flatley Brennan, Ph.D., R.N. In the article, Marianne Kolbasuk McGee explores what 2012 might hold for patient engagement in health care. She also interviewed Missy Krasner, a former Google Health executive. Read an excerpt below, or visit InformationWeek to read more.

“… doctors will have to convince patients to get more involved in their own healthcare--including using their own data to keep better tabs on their illnesses. In fact, payments tied to better patient outcomes--helped by smarter use of patient data-- is a big driver for more healthcare providers to participate in patient engagement initiatives, Brennan said.

Yet, with so much on doctors' plates as it is—"most doctors don't want a tsunami of new data" added to EHR and other systems from their patients' home health monitoring or wellness devices, said Brennan. That's especially true since most of this data doesn't warrant emergency care.

However, when there is an issue that requires immediate attention, Project HealthDesign teams have found that patients' monitoring data can be successfully sent to or shared with other clinicians, such as triage nurses or case managers, who can often help facilitate earlier intervention, or give feedback to patients without overwhelming doctors.”

Project HealthDesign Health Policy Comments Featured on Pioneering Ideas

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

In 2011, Project HealthDesign provided feedback on seven proposed policies. These ranged from applauding the HHS Proposed Rule on Patient Access to Lab Reports, which would allow patients to become more engaged with their health data, to calling for better distinctions between mobile apps and mobile medical apps under the FDA Mobile Medical Application Guidance. Working together to help refine these types of policy proposals is even more critical now as we enter a new era of widespread adoption and use of health IT.

via rwjfblogs.typepad.com

Visit Pioneering Ideas today to read "Project HealthDesign Provides Input on Health IT Policies" and learn about the seven health policy comments we issued in 2011.

KevinMD Features Op-Ed from Past Project HealthDesign PI

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Visit KevinMD.com today to read “Using a mobile app to help chronic pain,” an op-ed by Roger Luckmann, M.D., M.P.H. Dr. Luckmann, who is a family physician, served as principal investigator of a past Project HealthDesign team from the University of Massachusetts Medical School. His team designed an electronic pain and activity diary to help patients document their daily pain experiences, medication regimens and physical activities. This system inspired Dr. Luckmann’s work on a similar mobile application that is set to launch in the Mac App Store soon. Read the article to hear Dr. Luckmann’s perspective on effectively managing pain by learning more about patients’ daily lives and activities.

Top 5 Posts from 2011

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Join us as we look back at our most-read posts from 2011. We’re grateful for your interest and the many conversations these posts have sparked throughout the past year. We look forward to sharing more updates with you, and encourage you to tell us what you'd like to hear about in future posts.

1. BreathEasy Android Application and Web Dashboard Design
   “The BreathEasy Android application is designed to be an easy-to-use tool that allows study participants to enter observations of daily living (ODLs) such as peak flow readings, asthma triggers, stress and activity levels, sleep patterns, symptoms and medication use.”
   
   
2. PCAST Report Comment: Looking Toward Truly Patient-centered Health Data
   “Yet even as I affirm the overall spirit of the report, I find myself searching for a more explicit focus on the patient. I was hoping for a report addressing health information technology, but this report focuses more on health care information technology.”


3. When is a Mobile App a Mobile Medical App?
   “Today, medical conditions are significantly improved — and even prevented — by healthy behaviors, and providers might prescribe or at least recommend particular diet or exercise protocols as part of medical treatment. Many mobile health applications in development and in active use today fall in this gray area between medical and health/wellness.”
   
   
4. Patient Engagement: A Key Ingredient in Accountable Care Organizations
   “We think that knowing a patient’s observations of daily living (ODLs) could help ACOs meet quality improvement goals under the Medicare Shared Savings Program. We also believe that the program, with its focus on patient engagement and care coordination, could go a long way toward convincing health care providers to incorporate patient-defined, patient-generated health information into the clinical care setting.”
   
   
5. In the Wake of Google Health
   “Beyond support for clinical health information, we know people also want support for personal health information like observations of daily living. These types of personal information have little representation within current EHRs. Thus, a central challenge will be to provide systems that can integrate both clinical and personal health information in meaningful ways.”

What other posts from our blog or other sites are on your must-read list from 2011? Let us know in the comments.

Institute of Medicine Weighs In On Health IT and Patient Safety

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

All of us working in health care are keenly aware of the importance of ensuring that health IT improves the quality of health care without creating a new set of patient safety risks. With the release of a new report titled “Health IT and Patient Safety: Building Safer Systems for Better Care” by the Institute of Medicine (IOM), the issue of health IT safety is now on the radar screen as a major policy challenge.  

IOM released the report in response to a request by the Office of the National Coordinator for Health IT (ONC) for recommendations about what a comprehensive health IT safety policy should look like. Among other recommendations, IOM suggested that the federal government create a new independent watchdog agency, along the lines of the National Transportation Safety Board, to accept reports on patient deaths, serious injuries or potentially unsafe conditions associated with health IT. IOM skirted the issue of whether the U.S. Food and Drug Administration should have immediate responsibility for overseeing health IT safety.

While the entire report is worth reviewing, I want to call special attention to the fact that the report includes a chapter devoted to the safety of health IT tools “designed to engage and support patients in health-related decision making and management of their own personal health information” (see chapter 5 “Patients and Families Use of Health IT: Concerns about Safety”). The chapter specifically references patients’ ability to use personal health records (PHRs) and other tools to record and share “activities of daily living.” It also cites “Project HealthDesign: Rethinking the Power and Potential of Personal Health Records” by Patricia Flatley Brennan, Steve Downs and Gail Casper.

The report doesn’t offer up a silver bullet for avoiding patient safety risks created by PHRs and other patient engagement tools. Rather, it highlights that health IT is one component in a larger sociotechnical system that includes technology, processes, organizational practices and the external environment, and that adding patients into the mix inserts an additional layer of complexity when it comes to patient safety.

The report’s key point about PHRs is summed up in the following quote: “Given the importance of clear patient-provider communications, special attention may have to be devoted to ensuring that computer-mediated interactions are not used inappropriately.” It goes on to note that one important way to ensure patient safety is for health care providers to manage patient expectations about how information they include in a PHR or other patient engagement tool will be used. According to IOM, health professionals, patients and their families need to develop “a shared understanding of appropriate use of patient-centered, validated data.”

Sound familiar? It should, because it’s consistent with the discussions we’ve been having with the current Project HealthDesign grantee teams about how to minimize health care providers’ medical malpractice liability when incorporating ODLs into clinical care assessments and decisions. In April 2010, the grantees raised a number of concerns, such as how to ensure the accuracy of patient-generated health data and whether health care providers are expected to review every piece of information that patients provide on a round–the-clock basis. These concerns are driving Manatt and CDT’s work on a set of recommendations to develop a shared set of expectations among patients and health care providers about the role of patient-generated data in clinical care.

Although we are formulating these recommendations with a focus on reducing health care providers’ legal liability — a cross-cutting policy issue that could stymie the incorporation of ODLs into clinical practice if not addressed — IOM reminds us that, at the end of the day, managing patients’ expectations about the incorporation of their ODLs into their care is also a patient safety issue.

The IOM report makes a total of 10 patient-safety related recommendations. I encourage everyone to review the recommendations and to read Chapter 5 of the report.

Read more posts about legal and policy issues.

Reflections from the First Two Months of Data Collection

Karen Cheng, Ph.D., Estrellita Co-Principal Investigator, University of California, Irvine

About two months ago, we did our first baseline interview. So far, four parents have started in the intervention group (and have received mobile devices with our app) and two parents in the comparison, or control, group. Two more participants are scheduled to start the study by the end of this week.

So far, our intervention participants have given us very positive feedback that they enjoy using the Estrellita system. The two families with the sickest babies seem to be the most consistent in recording their observations of daily living (ODLs), and one of those families even reported using their baby’s ODL data during an appointment with a specialist.

Not surprisingly, most of our participants identify themselves as early adopters of new technology — even if they cannot afford (and therefore do not have) the newest technology.  They report being drawn to this study for the opportunity to use the latest technology.

One interesting discovery was that parents were concerned about weighing their babies when the weather became colder. We were not seeing weight data come in regularly for most of the babies, and we gently reminded parents to let us know if they were having any trouble with the scales. One parent finally responded, explaining that her baby had been sick and she was reluctant to put him naked on a cold scale. An EDAC case manager contacted the parent and explained how to zero out the scale with a blanket and then put the baby on the scale. Problem solved, and weight data came in the next day!

As difficult as recruiting has been, scheduling the interviews has been just as difficult and maybe even more difficult. I spent much of last Friday afternoon in my car in the parking structure of CHOC Children's Hospital, waiting for a participant to return from an unexpected errand for our scheduled interview. My colleague, Karen Tang, spent all of Friday afternoon in a parking lot in another part of Orange County, waiting for a different participant. That participant missed her scheduled interview as well.

I look forward to our upcoming mid-study interviews, and hope to learn more about parents’ experiences with the Estrellita system and their overall strategies for managing their children’s health information in the midst of such hectic lives.

Learn more about the Estrellita (formerly FitBaby) project.
Read more posts from the Estrellita (formerly FitBaby) team.

Creative Commons photo by biblicone.

If I’d Only Known Then What I Know Now (A Letter to Myself)

Katherine Kim, M.P.H., MBA, iN Touch Principal Investigator, San Francisco State University

Dear Kathy,

Three years from now you are going to be finishing the iN Touch project. You’ll have done some things well, made plenty of mistakes, and learned so much. I’m writing this letter to share some of those lessons.

1. You and Christina made the right decision to apply for the Project HealthDesign grant, even though you were worried because those grants from the Robert Wood Johnson Foundation are so competitive.


2. When you start hitting road bumps, lean on your team. Christina, Hali, Judy, Cam-tu, Holly, Ed, Janelle, and Yulia will amaze you with their creativity, optimism, gumption and all-around smarts.


3. The IRB approval process will take twice as long as you expect. The phased IRB that Barbara Massoudi suggests will be the way to go. Submit the application design and testing IRB right away, then work on the intervention IRB which will probably undergo some changes based on the testing. Just-in-time IRB will not be soon enough.


4. Recruitment will take twice as long as you expect. Prototype your recruitment process with the clinicians and staff. Don’t be discouraged by the disconnected phone numbers and no-shows. Remember that life is complicated and messy for the patients. Start recruiting as early as possible.


5. Over-recruit. I just said life is complicated and messy for patients. Even if they want to finish the study, a third of them won’t be able to. Don’t feel bad, this is typical for health and lifestyle studies and those studies with younger and minority participants have even higher dropout rates. You’ll need to recruit more to compensate.


6. Developing attractive, useful reports of ODL data will be harder than you expect. The clinicians won’t know exactly what they want so you’ll have to start out with a mock-up. Recruit a visualization/design expert next time.  Oh yeah, the hospital, clinic, and school will all be on different browsers and versions and they won’t want to update just for you. So make sure to test the reports on multiple browsers.


7. Use multiple communication modes for reminders and scheduling. Paper notes still work!  Deliver them to the classroom to remind youths to come to their appointments. Some of them will want reminders to record ODLs through their iPod Touches, others via text messages to their phones. Forget about email – they never check email.


8. Be ready to educate and evangelize. Hospital, clinic, and school staff members haven’t heard of observations of daily living (ODLs) before and they’re not sure how they feel about mobile technology. You are not just asking them to partner with you on a project, you are asking them to change how they work and engage with patients.


9. The youths who participate in the study will amaze you. They are motivated and excited to use the technology and new strategies to meet their health goals. They’ll teach you a lot about improving health behaviors.

Have a great time with the iN Touch project.

Kathy

Patient Uncertainty as a Motivator for Study Participation

Kathleen Morrison, M.P.H., Crohnology.MD Project Co-Director, Health Communities Foundation

Medical sociologists and public health experts have recognized the important role that patient uncertainty plays in the lives of patients with chronic diseases for decades.¹ Fifty years ago, the standard paradigm in the health care system was one of profound information asymmetry, whereby patients depended on physicians to inform them of all aspects of disease diagnosis and treatment. As the disease burden in the U.S. shifted from primarily acute disease to primarily chronic disease, the roles of patients and providers have barely changed. Because chronic disease has no cure, requires patient engagement for effective treatment, is best addressed if the patient is knowledgeable about consequences of the disease and its therapies, and is most effectively treated if the patient and provider collaborate, it requires a different level of patient engagement than acute disease.² These concepts of patient-centered care and patient management of their own information are at the heart of the Project HealthDesign mission, and promise to forever alter the role patients play in the treatment of their diseases.

Crohn’s disease disproportionately impacts young adults. The average age of onset is 15-30 years, a time when many people make the most important and long-lasting decisions of their lives. When we interviewed a small sample of our Crohnology.MD patient cohort, before we deployed the technology for the study, we asked them what the most difficult aspect of living with Crohn’s disease was. It is noteworthy that 100% of the patients interviewed cited uncertainty about their future disease symptoms as the most difficult aspect of living with Crohn’s and as the primary motive for wanting to participate in this study. Patients who were healthy at the time of the interview were worried about when they would get sick again, and how sick they might become. Patients who were suffering from active disease symptoms worried about the unknown: How bad would their symptoms get,? When would their symptoms end? A couple of patients noted that, in some ways, it was easier when there was a disease flare, because then there was no uncertainty – it was clear that the only option was to stay in bed. As the interviewer, my heart went out to our patients; as a researcher, I felt that they were spot-on in deciding to enter this study. Our patients have chosen the observations of daily living (ODLs) that they feel are relevant to their life and health, and they are now able to view the ODL data they’ve recorded and look for ODL interactions and trends in the mobile app we developed for this study.

Going forward, we hope that the patients who use our technology will be able to identify ODLs (either individually or in groups) that directly impact both wellness and disease severity. We would also hope to see improved patient/provider collaboration, and perhaps even time and cost savings associated with more efficient (or reduced) clinical appointments. In the short run, however, if we can help patients reduce the stress associated with their uncertainty about their disease, by engaging them in monitoring and reviewing their data and providing an avenue to make associations between ODLs, medications, and well-being, then perhaps we will be addressing the patients’ #1 concern. Not too shabby.

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¹ Davis F. Uncertainty in Medical Prognosis, Clinical and Functional. Am J of Soc 1960.

² Holman H , Lorig K. Patient Self-Management: A Key to Effectiveness and Efficiency in Care of Chronic Disease. Pub Hlth Rep 2004;119:239-243.

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Learn more about the Crohnology.MD project.
Read more posts from the Crohnology.MD team.

Build It and They Will Come: Can Technology Change Behavior?

Murrey G. Olmsted, Ph.D., BreathEasy Senior Methodological Advisor, RTI International

I recently heard a story on the news about the famed “Field of Dreams” farm in Dyersville, Iowa. This story reminded me of the approach taken with personal health records (PHRs) and health tracking devices over the past decade. Well intentioned clinicians, researchers, technologists, and others have brought many products to the market and have assumed that if you build a new device or PHR then people will use it to improve their health. As a result, we now have electronic devices that track steps taken, food consumed, water drunk, hours slept, and many other indicators of health and health-promoting behaviors. Now even our smartphones can provide many of these functions via apps that take advantage of motion sensors, GPS tracking, photo uploading, social networking, and barcode scanning. One common feature that most of these tools share is that they are tied to a record system such as a diary, tracking log, or PHR.

This all sounds great! More technology to enhance health that is portable, easy to use, and probably works on the smartphone I already have. If I were only to read the promotional literature, I might be convinced we are heading toward a golden age of health improvement with technology leading the way.

However, there is some trouble in the world of PHRs and health-promoting technologies:

• First, the annual CDC reports indicate that on average people are still significantly overweight, developing diabetes at alarming rates, and struggling with many chronic health conditions.
• Second, most devices or record systems don’t talk to each other. For instance, my smartphone tracks walking and running data on a website provided by a major sports manufacturer. The record is great in terms of helping me track my activity and communicate with my friends, but it does not connect to my own physician’s clinical electronic health record (EHR) or any other system that I have.
• Third, the PHR used at my doctor’s office provides tools for tracking my historical health data, but does not provide any help on what steps I need to take to enhance my health going forward; this is a common problem with PHRs, as most serve only as patient information portals rather than offering the full functionality needed.
• Fourth, the options for consumer-oriented PHRs are declining. For instance, Google Health announced earlier this year that they would be shutting down their PHR service at end of 2011 due to the lack of broad consumer adoption. As a result, I now have to choose between the PHR offered by my doctor or one of the few remaining national PHRs still available (e.g., Microsoft HealthVault, WebMD PHR, etc.).

So what’s the problem? I thought we had the technology? 

It turns out—not surprisingly—that behavior is difficult to change. Technology is great and people generally enjoy using it, but the impact is frequently not long-lasting unless fundamental behavior change occurs. To do that, the current crop of technological solutions will need to address not only the challenges listed above (in particular connecting all patient records), but will also need to help users change their behaviors. Published research is increasingly citing the need for behavior change as a key component of health-promoting technology. Also, authors are beginning to draw the distinction between PHRs that function as health information banks (e.g., look-up systems for lab results) and those that are truly ‘personal’ which can be customized to the needs of the user. What is really needed are tools that can serve the specific needs of users by guiding and encouraging them along in their journey toward behavior change, not just simply track their data and hold it for safekeeping. If the technology can make this shift, then we may start to see better results in those annual CDC reports.

Let us know what you think: How is behavior change key to successful health technology development and use?

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

Developer Challenge Roundup

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

From new PHR platforms to creative mobile health applications, the opportunities for improving health and health care seem to multiply daily. We hope to see more developers and designers become passionate innovators in the health and health care space. Participating in developer challenges such as these upcoming opportunities might help you catch the vision!

Robert Wood Johnson Foundation Challenge

Aligning Forces Challenge

• The challenge: Develop an application that builds on the publicly available Aligning Forces for Quality (AF4Q) health care quality measures and helps patients access better care.
• Requirements and desired functionality: The application should incorporate AF4Q health care quality measures, allow patients easy access to inpatient and outpatient health resources, and guide them through the decision-making process.
• End of submission period: December 31
• Learn more or register for the challenge.

ONC i2 Challenges

One in a Million Hearts Challenge

• The challenge: Develop an application that empowers individuals to improve their heart health.
• Requirements and desired functionality: The application should educate individuals about the Million Hearts initiative, allow individuals to input information about their current health state, use the health data they provide to generate targeted recommendations about how to improve their heart health, and be capable of transferring the individual’s information to an EHR using Direct specifications.
• End of submission period: December 31
• Learn more or register for the challenge.

popHealth Tool Development Challenge

• The challenge: Create an application that leverages the popHealth open source framework and provides greater insight into patient populations (e.g., help clinicians improve patient safety, help providers engage patients and families, etc.).
• End of submission period: January 20
• Learn more or register for the challenge.

Reporting Device Adverse Events Challenge

• The challenge: Develop an application that facilitates the reporting of adverse events related to patient use of medical devices in hospitals, clinics and home environments.
• Requirements and desired functionality: The application should allow patients to record adverse events easily, integrate with EHR and PHR platforms, capture patient demographic information, capture information about the medical device, be platform-agnostic, and employ NwHIN standards.
• End of submission period: February 3
• Learn more or register for the challenge.

popHealth Tool Development Challenge

• The challenge: Work with a public health expert to co-create an application makes it easy for users to use the Healthy People 2020 Leading Health Indicators (LHIs) in meaningful ways.
• End of submission period: March 9
• Learn more or register for the challenge.

dwellSense Visualizations

Anind Dey, Ph.D., dwellSense Principal Investigator, Carnegie Mellon University

During an earlier phase of our research, we identified the prospective information needs of our various stakeholders: elders, caregivers, occupational therapists and primary care physicians. In particular, our elders were quite interested in real-time or daily information about their performance of their everyday activities, but didn’t find a lot of value in long-term data or trends. They weren’t opposed to the long-term data, but they really wanted to have the daily information in order to see if they had taken their medication, and to see how well they were doing each day.

We designed the visualization below to run as an application on a Samsung Galaxy 10.1” tablet. The visualization has three horizontal panels, one for each of the ODLs that our sensing systems are tracking: medication taking, making phone calls and coffee-making. The large type size, the colors used and the simple design were purposefully chosen to make it easy for the elders to consume the information.

For medication tracking, we present information about morning and evening pills. In the visualization below, you can see that the subject took their morning medicine on time at 5:07 a.m., but had difficulty determining the right day of the week, having opened the Sunday and Monday doors before correctly opening the Tuesday door. The subject missed the evening pill completely. The two bar charts on the right indicate how timely the subject was in taking his or her medicine and how well the subject performed the task. Because the subject missed his or her evening medicine, the timeliness bar chart is red . The other chart is yellow to indicate his or her difficulty in selecting the correct pillbox door. These bar charts are intended to serve as quick additional abstractions to make it easy to consume the medicine-taking information.

For the phone calls, the visualization indicates the number of calls made and, of those, the number of times the user . The bar chart provides a summary of how well the user performed this task.

For coffee-making, the visualization indicates whether the subject made coffee correctly. In particular, it shows whether the subject performed each of four key coffee-making tasks correctly: getting water, adding the coffee, placing the carafe in the coffee maker and starting the machine. In this case, the subject performed all four tasks correctly, which is what the associated bar chart indicates.

 

We are still going to provide a long-term visualization to some of our subjects to see what value it can provide, despite their seeming lack of interest. This will be a more traditional line graph, with time on the horizontal axis, and the quality of the performance of the task on the vertical axis. Subjects will be able to click on any of the data points to receive the regular daily view for the chosen day. We expect that by providing both kinds of views, we can improve subjects’ awareness of their own performance, and that this will cause them to engage others in discussions (e.g., caregivers, occupational therapists, doctors) about their abilities, with the goal of improving their performance over time.

Learn more about the dwellSense project.
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Looking Long-Term

Anind Dey, Ph.D., dwellSense Principal Investigator, Carnegie Mellon University

One idea that pervades each of the Project HealthDesign studies is that computing and advanced technology has the potential to change both people’s impressions of their health and their actual health. At least that’s the promise. One of the challenges is that these positive changes often occur over a long period of time, and usually require individuals to integrate a new technology into their lives.

In human-computer interaction, the research field I call home, most of the studies of technologies for behavior change occur over a few weeks, with only a few lasting more than a month. The difficulties in running a longer study are well-documented: recruitment, attrition of participants, maintaining ecological validity while keeping the study as “clean” as possible, researcher fatigue, analysis strategies, funding, etc. Additionally, researchers are able to conduct research and get papers published without conducting such long studies.

The benefits too are well-documented: a long-term study may be the only reasonable and ecologically valid way to study the impact of a technological intervention, novelty effects of introduced technologies are minimized, there’s more time to test out technology in the field and to evolve it before needing to collect data, it gives time for users to feel comfortable with researchers and introduced technologies, and it provides an opportunity to study phenomena that occur over a long period of time.

In our project, we have the opportunity to conduct a long-term study with a few of the early-stage users of our technology. We reported on their use of visualizations of their activities after they had used our embedded assessment system for four months. Our subjects have now used our system for about a year, and we are planning on a follow-up study to understand 1) whether the problems they noticed in the performance of everyday activities caused them to change their behavior to improve performance, 2) whether repeated but infrequent reflection on their data helps them understand their performance data better than with a one-time reflection, and 3) whether our users still find value in the embedded assessment system now.

Although short-term studies of such technologies are useful and common, truly understanding how performance of activities changes over time requires a long-term study.

Learn more about the dwellSense project.
Read more posts from the dwellSense team.