A Reminder of the Important Work We Do

By Gillian Hayes, University of California, Irvine, FitBaby Principal Investigator

Last week I got one of those emails you hope never to get. A young child, a participant in a former study, had passed away. I don’t know the medical details of her death, but I do know the child had a severe infection. She was sent home from the hospital with the hope that she had only a small infection, and her parents were instructed to bring her back only if she began to pass blood.

Commonly seen at any hospital, the available resources are continually constrained, and often those children who do not seem to be the sickest are sent home with medication to rest and recover away from the kind of powerful monitoring equipment and medical expertise available at the hospital, sometimes with devastating consequences. Further complicating the situation, research would suggest that the parents, not native English speakers, most likely had difficulty in communicating with the physicians about their daughter’s condition.

Unfortunately, this is not the first time I have experienced the death of a research participant. During my doctoral work, a child enrolled in one of my studies had a fatal heart complication. The videos we took of her for our research are some of the last images of her alive. There have been other heartbreaking events during my research since. This is only the latest, but I am sure not the last.

To the medical researchers and clinicians reading this blog, perhaps these life experiences are familiar. Sadly, every day, in hospitals and homes around the world, patients are dying. For me, however, as a professor in Information and Computer Science, these experiences can be a bit jarring—particularly when I compare them with the kinds of everyday experiences my colleagues have with participants in their studies.

As sad as these events can be, however, they serve an important purpose. They remind me why we are doing what we are doing. As designers and inventors of new technologies, we may not be creating the next great vaccine or finding new therapies for stem cells, but in our own way, we are creating tools to help heal. It is my sincere hope that infants and toddlers like the one who recently passed will not be sent home from the clinic with assurances of a quick recovery if all of the information we are collecting and sharing is available to the parents and their physicians. I hope that more information and more empowered parents can improve communication with providers and that those providers will listen, incorporate this information into their practices and at the end of the day, patients will receive better care.

Learning to Work Both on the Technology and Clinical Side



By Anind K. Dey, Carnegie Mellon University, Embedded Assessment Principal Investigator

One of the challenges we are facing on our project is the attempt to conduct research across two different disciplines or domains and to demonstrate credible accomplishments in both. On one hand, there is the world of technical achievement in computer science, which myself and the members of my team are very comfortable with. We know what an appropriate contribution is in this field and what entails appropriate demonstrations of such contributions. On the other hand, is the focus on clinical outcomes, and is an area where we feel much less comfortable.

From our interactions with grantees from Round 1 of ProjectHealthDesign, it's clear that others share the same discomfort, although they may feel more comfortable on the clinical side and less so on the technical or user interface side.

Our goal for our project is to better understand how embedded sensing, a technical construct, can be used to help elders and related stakeholders reflect on sensed aspects of everyday behaviors to determine whether there is a change in an elder's cognitive health. We have chosen this goal specifically, as it matches our understanding of a technical contribution in our field of human-computer interaction.

In addition, a clinical goal which we will not achieve in our project would be to validate that the measures obtained from embedded sensing are as accurate, if not more accurate, than existing assessment techniques. While we would love to work toward this goal, it seems beyond our abilities with respect to the numbers of people we can work with, and the timeline of ProjectHealthDesign.

I would love to hear from my clinical colleagues and others about methods or approaches that would allow for both technical and clinical contributions. In this age of increased interest in applying technology to clinical domains, a better understanding of how to support both types of work simultaneously would enable many of us struggling on both sides of this problem. What are some approaches we should pursue?

Announcing Journal of Biomedical Informatics Supplement

Written by Kevin B. Johnson, M.D., M.S.

See the full supplement here www.tinyurl.com/Project-HealthDesign

PHR products are rapidly evolving and increasing in numbers. There are many varying approaches to ensuring that the record be patient-controlled, from universal serial bus devices to more sophisticated and robust models of the data that embed access and authorization rights into the metadata of the record.

Each of these technically distinct approaches is based on different, and typically provider-centric, perceptions of the essential design requirements. However, these visions for PHR development often lack the association with specific use cases. How will these technical approaches scale to meet the demands of a child being cared for in multiple care settings? How well do these approaches align with the types of data and monitoring of an adult with diabetes? What can we learn about health behavior modification through home gaming systems, and how should those systems interface with PHRs?

It is in the spirit of this reality that the Pioneer Portfolio at the Robert Wood Johnson Foundation launched Project HealthDesign. This initiative was created to “stimulate innovation in personal health information technology.” After an extremely competitive applications process, nine teams were awarded funding to create a user-refined vision and prototype to demonstrate how personal health information technology can solve real problems that patients experience today. These projects encompassed a wide range of medical specialties, patient care settings, and patient demographics.  Each project team worked both as a group and collaboratively with other project teams to refine visions, develop common tools, and present their findings.

The findings are plentiful. The results are exciting, to say the least, and transformative in many respects. And, best of all, these results are summarized in the current Journal of Biomedical Informatics supplement. We anticipate that this online-only supplement, which consists of manuscripts and appendices with copious screen snapshots, will be an extremely useful vision for the advancement of personal health records and architectures. I hope you agree!

 

ODLs at multiple levels

By Edmond Ramly, Project HealthDesign PhD Student, University of Wisconsin-Madison

As we investigate the observations people make in their everyday life, let's take a quick step back and look at the big picture.

Biomedical sciences have been improving people's health for centuries, and exciting new advances keep coming. At the same time, biomedical practitioners only get snapshots of people's health states. A person might spend three hours per year with a clinician, and then self-manage their health and health observations during the remaining 8,757 hours of the year.

Developing tools to support self-observations and integrate them into clinical workflows is a good start. But observations of daily living (ODLs) are relevant not only at the levels of the individual and the clinician. As we are seeing with the meaningful use of health IT conversation (see Navigating the path to Meaningful Use goals and They can’t do it alone), thinking about ODLs is very important at the health policy level as well.

More systematically, we can think of six categories of potentially relevant levels.

1. Infrapersonal: Air composition (pollutants, pollen), electromagnetic waves, radioactive emissions, etc.
2. Intrapersonal: Molecules, biochemical pathways, genetics, physiology, psychology, etc.
3. Personal: Sensory stimuli, feelings, behaviors, moods, attitudes, thoughts, decisions, etc.
4. Interpersonal: Patient-clinician interactions, patient-peer interactions, patient-family context, etc.
5. Extrapersonal: Culture, socio-economic status, insurance coverage, environmental context, etc.
6. Suprapersonal: Population health, health policy, health economics, etc.

Let me explain what I mean when I say ODLs may be relevant at these levels. At any given level, ODLs may be relevant because:

• There are things at that level that can constitute ODLs (e.g., ambient pollen count at an  infrapersonal level or thoughts at the personal level).
• There are issues that need to be addressed at that level in order to achieve the potential of ODLs (e.g., meaningful use of health IT by patients at the health policy level, understanding the underlying phenomena behind ODLs at various intrapersonal levels).
• ODLs might be highly idiosyncratic at some levels but share common characteristics at other levels (e.g., multiple instances of a given ODL may be very different across individuals but have similarities among individuals with similar cultural backgrounds).

Now, keeping in mind that the list I suggested is more explorative than exhaustive or definitive, it looks like we still have plenty of uncharted territory to explore as we continue investigating ODLs.

What's more, another exciting challenge will soon emerge as well: how do we integrate ODLs and what we know about them within and across levels? Integrating ODLs in clinical workflows and in health policy is only a start.

We have an exciting journey ahead!

Project HealthDesign Reaches the Business Community

By Project HealthDesign

Fox Business News reports on the efforts of Project HealthDesign and other patient-centered projects to help patients become a more integral part of their own health-care. By utilizing new developments in information technology, such as electronic health records, each project is exploring the effects of patients being more aware of their health and more involved in the treatment process. Patricia Flatley Brennan, National Program Director of Project HealthDesign, states that “patients may not cure their conditions, but engagement in their own treatment plan will help to keep them stable.” Each project believes that the larger role played by patients will help them achieve more effective, timelier care, as well as an overall improvement in their health and well-being.

An App Focused on Pain but in a Good Way

By Steve Downs, Assistant Vice President of the Health Group, Robert Wood Johnson Foundation & Patricia Flatley Brennan, Director, Project HealthDesign

At the recent Health 2.0 Conference in San Francisco, the winners of three different RWJF-sponsored Health 2.0 Developer Challenges were named – including the Project HealthDesign Challenge co-sponsored by RWJF and the California HealthCare Foundation. You can read more about the other challenges on the Pioneering Ideas blog.

For the Project HealthDesign Challenge, we asked developers to create apps for the web, smartphones or tablets that take into account elements of the PHR apps created in the first round of Project HealthDesign and can run on a commercial personal health record service (like Google Health or Microsoft HealthVault).

We were unsure where this experiment might take us, but ended up seeing some really creative apps that we probably would never have thought of on our own. While we had to choose one overall winner, there were several really strong projects that stood out and exemplified the true spirit of the challenge.

• The winner – Ringful Health, was inspired by the University of Massachusetts’ visual story about a handheld electronic pain and activity diary that allows people to record information about their pain experience, treatment and physical activities throughout the day. Their app – Pain Care – helps patients with chronic pain better manage their symptoms, medications and communication with their providers. The app allows a user to create an electronic pain journal to report pain episodes, triggers and medications. It then correlates all the data, gives insight into whether medications are effective and reports back to a physician on progress. The app is currently available for the iPhone and will also be available for Android sometime in the near future.
• Another competitor, CureTogether, has been collecting information on the patient experience to help people track their health. Like CureTogether, we have found that recording information like diet, exercise, mood and pain – observations of daily living – is important to patients and can help give insight into and guide a patient’s treatment. CureTogether extended their website to now allow patients to track their lab test results. Patients can manually input data from their printed test results into the website as well as import data from Google Health or HealthVault if they use these services. With quantitative information on over 600 medical conditions on the CureTogether website – it will be exciting to see how this new feature will help patients even more.
• Fred Trotter also decided to track observations of daily living for people with chronic pain. However, instead of using Google Health or HealthVault as a platform, Fred used Twitter. Fred had the notion that people already use Twitter to track what is happening with their lives, so why not track what is happening to their health? That builds upon another key finding from Project HealthDesign: help people track their health information by incorporating the process into their existing daily routine, not adding something new. He built a front end that would enable people to enter basic data about their pain and related information and then store the data on Twitter using a structured syntax. If someone was depressed, for example, they could include #mood(depressed) or if they went for a swim that day, they could type, #exercise(swim). To help analyze patterns and trends, Fred opted to use Grafitter, a free utility that graphs text found on Twitter and other sources. You can try the application out for yourself at toeleven.org.

All in all, we ended up seeing some really interesting apps that expanded upon Project HealthDesign concepts. We felt that this challenge was successful because we were able to leverage our current investments and help the participants guide and enhance their ideas through our earlier work. We also liked the process. Sometimes foundations get too caught up in big grants and elaborate application processes. This was simpler: make something and we’ll check it out. In so doing, we tapped into a different mindset, a particularly creative one, and what resulted was well beyond what we would have envisioned.

We are eager to see where these apps may go and are also looking for new creative ways to stimulate innovation in design. Any ideas?

Pooling Intellects to Achieve Better Health IT Legal Policy

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

Read all Manatt and CDT blog posts

 The most recent Project HealthDesign grantee meeting at the Vanderbilt Center for Better Health included a session on cross-cutting legal and policy issues.  The purpose of the session was primarily to seek input on legal issues – both real and perceived – that are confronting grantees in moving forward with their projects.  But grantees dug deeper and also teed up issues that, if not resolved by policymakers, are likely to create obstacles to more widespread adoption of care models that leverage technology to bridge the information gap between clinical care teams and patients to achieve better health outcomes.

Grantees brainstormed issues arising in three categories:  provider liability concerns, assuring the security of information transmitted between portable devices and other computer systems, and the lack of privacy protections for many types of personal health records.  The Manatt-CDT team will use this input to develop materials that recommend potential solutions to some of the more critical policy challenges.

Although we are still digesting these materials, I came away with these initial impressions:

• These open policy issues are clearly very important to grantees.  When we asked for feedback in the session, the response was almost overwhelming.
• Some issues showed up in more than one category, which of course underscores their cross-cutting nature and suggests a high degree of interdependency:  resolving concerns in one area can help us alleviate issues in another.  For example, if we had privacy and security provisions that covered health information regardless of who holds it, we would have less need to focus on whether information shared with a patient by mobile phone is or isn’t “PHI”.
• Some of the concerns raised in the legal/policy issues discussion were also raised in grantee discussions about the operational challenges for their projects.  For example, grantees discussed the challenge of getting the clinicians or care teams to incorporate patient data into their records and workflow.  This operational challenge is closely related to the legal challenge of providers’ concern about liability for responding to patient-generated data.  A thoughtful solution involving careful management of expectations of both patients and providers/care teams should help address concerns in both areas.
• A number of the concerns raised by grantees targeted clear gaps or uncertainties in the law – for example, what protections are available for data entered by patients onto social networking sites or what are entities’ specific responsibilities with respect to the security of mobile devices used by providers to communicate with patients.  Further efforts by the Manatt-CDT team will likely focus on these gaps and suggest potential solutions for further consideration by the public, industry stakeholders, and policymakers.
• Grantees also raised some issues that are fairly well covered by existing state and/or federal law, but different interpretations of the law, or risk averse behavior on the part of health care organizations and institutions, leads to uncertainty and an unwillingness to take action or experiment with different care models.  Cutting through these “interpretation” challenges is probably the most difficult hurdle of all.

Watch video of the brainstorming sessions: 

1. Portable Device Security
   
2. Personal Health Record Security
3. Provider Liability Concerns