ONC Announces “What’s in Your Health Record” Video Challenge

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

If you’ve ever requested or downloaded a copy of your health record, then you’re eligible to enter ONC’s latest video challenge. To enter, create a video that’s less than 2 minutes long to share how you accessed and reviewed your health record. This challenge is one of several recent ONC efforts to ensure that patients and their families know and understand their legal right to request copies of their health records from most health care providers. There are several ways to access these records, including via an online patient portal, through an online personal health record, by email, or in person.

Video entries should describe a specific example (personal story, experience, testimonial, or thoughtful idea) of getting access to view your health record and what you found in your health record or what you did with that information once you had it. Cash prizes are available for this challenge, and first prize is $3,000. Entries are due Aug. 20, 2012 at 5 p.m. EST.

Learn more about the “What’s in Your Health Record” video challenge.
Learn about your legal right to access copies of your health record.

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!

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.

Towards a High Performance Personal Health Record

Marcos Athanasoulis, M.P.H., Dr.P.H., Crohnology.MD Technical Director, Healthy Communities Institute

A common hope among non-developers in the e-health and mobile space is that the personal health record (PHR) is the nirvana for keeping all data in one place and enabling a whole host of PHR applications. Although the PHR can do a pretty good job of keeping data in one place, what is often misunderstood is that for developers to do anything useful with a PHR, they inevitably need to have a local copy of that data. And, as soon as an application has its own data, it is a slippery slope to having its own data definitions, data that isn’t shared, and data that gets out of sync with the primary PHR. Until some major barriers are addressed, mobile application developers are faced with real challenges to actually building applications that run directly off of PHR repositories.”

Let’s take a look at the top four barriers to using PHRs as a true backbone for applications:

1: Performance

If you are querying a significant amount of data at once, rather than getting one measurement for one period, it is often not practical to rely on a remote query to database – especially if you want results in anything less than the time it takes to get a cup of coffee down the hall.

2: Network Availability

Most mobile applications cannot count on having a connection to the Internet. If the developer relies on a remote PHR to get their data, and there is no Internet connection, then the developer will not able to provide the user with the data they need. If the developer keeps a local copy, then they can access it with or without a network connection. 

3: Tools Availability

Most application development environments are optimized for a standard database backend. Most developers know how to write SQL to fetch data from a database, and they have the tools to readily use that data in an application. Adding a layer of an API call for every piece of data adds a considerable layer of complexity to the development process.

4: Lack of Standards

Even if there were a high performance, distributed PHR that let you write SQL directly against it, which one would you pick? You might have chosen Google Health. But because Google is discontinuing the product, Google Health is no longer a good choice. You could choose Microsoft HealthVault, but you are tying your fortunes to Microsoft. There is not yet a true distributed, open PHR that developers can count on for the next five years – or even the next year.

None of these barriers is insignificant. The Project HealthDesign teams have struck a balance by maintaining local copies of data, but, when possible, pushing data to and pulling data from PHRs like Google Health and Microsoft HealthVault. But until an open architecture for high performance exchange of PHR data is invented and adopted, mobile health applications developers will continue to maintain data locally and use the tools that allow them to build mobile health applications that really help people.

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

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ONC Releases PHR Model Privacy Notice

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

As more individuals begin to use personal health records (PHRs) to manage their personal health information, it is important that they be aware of PHR companies’ privacy and security policies. This is something that we at Project HealthDesign know well. Because of a new PHR Model Privacy Notice (Model Notice) created by the Office of the National Coordinator for Health IT (ONC), we hope that others will soon appreciate the importance of knowing how PHR companies use their data.

ONC released the Model Notice on September 12, 2011. It is a standardized template that a web-based PHR company can use to inform consumers about its privacy and security policies. According to ONC, consumers should think of the Model Notice as similar to a nutrition facts label for food:  it succinctly provides important facts that consumers should know before using a PHR. The Model Notice is meant to provide information to consumers in a uniform format they can understand, compare and use to make an informed decision about which PHR they would like to use.

The Model Notice has two sections: (i) the “Release” section; and (ii) the “Secure” section. Both tell consumers what the PHR company may do with their data. The “Release” section tells consumers whether the PHR company releases their data and for what purposes (e.g., for marketing and advertising). It also describes any data release restrictions the PHR company may have in place and explains whether the PHR company will stop releasing a consumer’s data once they close or transfer their PHR. The “Secure” section includes three points to help consumers identify the PHR company’s data security practices. Specifically, it identifies that the PHR company implements security measures; whether the PHR company stores PHR data in the United States only; and whether the PHR company keeps activity logs that record who accesses a consumer’s PHR and when.

ONC was likely motivated to release the Model Notice, at least in part, because many PHRs are not covered by existing health information privacy laws and regulations (e.g., the Health Insurance Portability and Accountability Act’s Privacy and Security Rules). Thus, there are no clear rules for them to follow when handling consumers’ health information. This is a significant gap in the country’s privacy laws. Although voluntary use of a Model Privacy Notice will not solve the problem, it is a step in the right direction.

ONC released a helpful document titled, “Consumer Guide to Understanding and Using the PHR Model Privacy Notice on PHR Company Data Practices,” which does exactly what its title suggests. We recommend it for anyone who uses a PHR. Additionally, the PHR Model Privacy Notice is available for PHR companies to begin using.

Let us know what you think about the Model Notice. Does it include enough information to be helpful?  Would the participants in your projects be able to understand what it says?  Can you think of any ways that you can employ the concepts behind the Model Notice in your projects?

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In the Wake of Google Health

Tim Patton, Project HealthDesign Ph.D. in Engineering Student, University of Wisconsin-Madison

There is wide speculation regarding the reasons for Google Health’s recently reported “failure.” At Project HealthDesign, we’re excited about experiments that probe the potential of personal health applications (PHAs), but we also know some won’t last. Although Google Health was one that didn’t, their experiment still leaves us with many valuable lessons.

The industry-wide consensus seems to be that personal health records (PHRs) and PHAs can only grow as extensions of EHRs. Because it provided a place to store data that has yet to be reliably unlocked from proprietary systems like institutional EHRs, others have indicated that Google Health was in some ways before its time.

However, those remarks are only one part of a larger and more complicated picture. 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. In the wake of Google Health, we can learn several lessons about how we might meet this challenge:

Must be social

Adam Bosworth, the original force behind Google Health, provided a very short answer as to why Google Health didn’t catch on with the general public. “It’s not social,” he says. I agree with him: Google failed to create a PHR experience that allows users to know they aren’t alone. Sharing raw health information isn’t enough. Technologies must also allow users to share experience and knowledge.

Unlike most Google products, Google Health didn’t allow users to leverage the prior experience of other users. Contrast this with PatientsLikeMe, which leverages user input to provide new insights into self-management and even potential scientific discoveries. To be fair, Google was working in a regulatory environment that made such sharing difficult. Thus, the challenge will be to develop methods that allow for voluntary sharing of personal health experiences and knowledge in ways that preserve privacy.

Must not add more work to busy lives

Google Health’s failure also suggests that PHR users are deterred by the burden of data entry. Their platform largely required manual data entry. Tech professionals who work with various types of data say that health care data is by far the most complex type of data. Although Google likes keep its products lean and its interfaces minimal, lots of calculation is typically done behind the scenes to leverage prior user input. Without similar ability to leverage the experience of prior users, Google Health’s minimal interface provided new users little direction and little motivation for making full use of the PHR.

Google Health has also been criticized for adapting—rather than adhering to—established standards, such as the CCR. Thus, future adoption of PHRs and PHAs might require some form of template system that allows health records to be set up and quickly populated through the use of interoperability standards. This is where the ability to learn from prior users’ experiences will be crucial.

Must provide a value proposition

A successful PHR platform must provide much more than a central repository for clinical and personal health information. It must also provide a means to easily work with that information to improve personal health and wellness (e.g., a personal health app store). Indeed, devices and apps that provide useful information in an unobtrusive way and integrate seamlessly have already shown some promise, even thriving in a marketplace where consumers have to pay for the service (e.g., Withings WiFi-enabled scale). PatientsLikeMe has had some success with this approach, focusing on smaller communities with unique and complex needs and building applications around them (starting with ALS and adding from there). We must find focused areas of need and create smaller PHAs that interface with data platforms like EHRs in order to add value. And these systems must align with recognized standards and allow users to maintain personal control.

What do people want when it comes to personal health management?

It’s likely that PHRs and PHAs that serve solely as stand-alone data repositories will never see wide consumer adoption rates. If personal health tools are to gain traction, they must leverage previous user input to benefit future users, automate and simplify management tasks (e.g., allow for automated data collection) and create value propositions by targeting demonstrated areas of high demand.

Federal Health IT Strategic Plan Comment: Creating a Patient-Centered Health Information Ecosystem

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

I want to thank ONC for the challenging yet thoughtful goals set forth in the Federal Health Information Technology Strategic Plan. This vision for the future of health IT will surely encourage everyone from clinicians and provider groups to researchers and developers to think—together—how we might best lead the country forward into a new, more connected era of health that considers both clinical health care and health in everyday living.

Goals III and IV are the most relevant to my work with Project HealthDesign, a Robert Wood Johnson Foundation national project that examines the potential for PHRs and observations of daily living (ODLs) to help people live healthier lives and get better care. We believe that ODLs, or data that reflect patients’ perceptions of their everyday health, serve to inform individuals about their health and help them take action or make decisions about their health. Our five current project teams are also working to see how ODL data (e.g., information about pain, mood, sleep, etc.) could help inform better clinical decision-making by allowing clinicians a peek into patients’ everyday lives.

As is suggested in Goal III, inspiring patient trust in the health information ecosystem is vital. We must use many different approaches in order to educate individuals about the risks and consequences of opting in or out of sharing personal health information. Additionally, efficient mechanisms that would allow individuals to access, review and update their personal health information permissions are needed. Individuals must be able to verify that their wishes have been documented and implemented as desired.

When considering Goal IV, we must not forget that health occurs outside the context of the health care system as well as within it. Every day, factors outside the system impact individuals’ abilities to manage their health. Additionally, the term “patient-centered” can mean different things to different people. Perhaps the most common understanding is that the patient is the target of health care.  A more expansive definition of the term defines the patient as the source and center of all health. I find the latter to be a more appropriate definition given our collective mission to improve health and reduce the burden of disease management. We must plan for and implement health IT that encompasses both definitions.

Project HealthDesign has shown that individuals are ready to become involved in our work with health IT. For example, participants in our teams’ studies have been eager to help us improve our PHR tools, including applications that track observations of daily living (ODLs). We have also found that as the participants provided this type of feedback, they became more aware of how these tools could help them improve or manage their health.

As we work toward a modern health information ecosystem, we must take into account many different types of patient-generated health information. Some patient-generated health information results from the clinician’s desire to know information about signs and symptoms experienced at home. Patients’ individual perspectives on health create another type of patient-generated health information: observations of daily living (ODLs). Health data generated by caregivers (e.g., parents of infants and caretakers of the elderly) are a third type of patient-generated data. Environmental factors that affect one or more people (e.g., pollen count, particulates in the air, radiation levels) comprise a fourth category.

Our project teams are finding that it is important to incorporate patient-generated data into the clinical workflow in ways that minimize the burden on the clinician. Early feedback from one of our teams suggests that clinicians do value patient-generated data, but that the ODLs a clinician values might be different from the ODLs a patient values.

Truly patient-centered care has the potential to revolutionize health care from both the patient and provider perspectives. Capitalizing on this new paradigm will require new processes and tools. We must remember the power of an individual’s unique perspective on his or her own health and equip patients to engage in these types of conversations as we plan toward the future of health IT.

This comment was submitted to ONC in response to the recently released Federal Health IT Strategic Plan. To read the Strategic Plan or other comments on the plan, please visit the Health IT Buzz blog.

More Patient Engagement in Meaningful Use

Bob Belfort, Manatt, Phelps & Phillips, LLP

As National Program Director Patricia Flatley Brennan and Deven McGraw of the Center for Democracy & Technology have discussed in recent blog posts, Stage 2 of Meaningful Use may set higher standards for health care providers’ engagement with patients. For example, in Stage 1, providers need only provide patients with an electronic copy of their health information upon request 50 percent of the time. But under Stage 2, providers may be required to use online secure patient messaging to communicate with patients via e-mail.

This move toward more patient engagement in Meaningful Use leads to an important question, which PricewaterhouseCoopers (PWC) explored in a recent research paper titled “Putting Patients into Meaningful Use”: How can health care providers use health IT tools, such as personal health records (PHRs), to effectively expand the care team to include patients?

A recent study suggests that less than half of all physicians are willing to use patients’ PHRs as part of their clinical work. Mistrust of patient-generated data, time constraints, lack of financial incentives and liability concerns are several issues that could contribute to this sentiment. To truly exploit the transformative potential of health IT tools, health care providers will have to become comfortable with engaging patients as more active partners in managing their own care. This is why Project HealthDesign is so important to ensuring that the government’s larger health IT adoption efforts succeed.

We are looking forward to talking about the issue of provider liability for reliance on patient-generated data and other related issues at an upcoming meeting with our five current project teams. In the meantime, we encourage you to let us know what you think about the steps PWC outlined for using PHRs to effectively expand the care team to include patients and consumers:

• Make providers (doctors, nurse practitioners) the face of the PHR.
• Define expectations for active participation by patients.
• Keep family members in the loop.
• Work side-by-side with patients as they use their PHRs.

They seem like good baseline recommendations to us. How would you build on them to be more specific?

Related resource:

• Read the full PWC report.

Can Meaningful Use Become More Meaningful for Patients?

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

Because so many of the Stage 1 meaningful use criteria apply primarily to professionals’ uses of health information technology (HIT) in clinical care settings, Project HealthDesign is pleased to see criteria proposed in Stage 2 that would allow patients to become beneficiaries of meaningful use of HIT.

Meaningful use shouldn’t focus exclusively on electronic health records (EHRs) and clinical care settings. It’s time to ensure that the benefits of HIT meaningful use extend to the everyday lives of patients and families.

We call for accelerating the criteria for meaningful use Stage 2 that would lead HIT to:

1. Exchange health data back and forth between EHRs, which house clinically originated data, and PHRs, which house patient-originated data. Health data arise from a variety of sources. Our work on Project HealthDesign has shown that patients value health data that they themselves define and generate. These types of health data, or observations of daily living (ODLs), can include data related to mood, pain levels and even sleep quality.
   
   
2. Allow patients to invite trusted others, including family members, friends and surrogate decision-makers, to access selected health data. The coordination of patient care would benefit from this type of shared access, which engages patients, clinicians and other individuals designated by the patient while also allowing each patient to maintain the level of privacy he or she desires.

Now is the time for a broader, bolder approach to meaningful use. Patients are relying on HIT professionals to ensure that the bilateral exchange of health data between EHRs and PHRs is meaningful for both patients and clinicians. For more information, please read the full Project HealthDesign Stage 2 meaningful use comments.

Related resources:

• View the full draft of proposed Stage 2 meaningful use criteria [pdf].
• Read Project HealthDesign national advisory committee member John Halamka’s comments.

PCAST Report Comment: Looking Toward Truly Patient-Centered Health Data

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

As director of the RWJF-funded Project HealthDesign initiative, I commend the President’s Council of Advisors on Science and Technology (PCAST) for the effort and care evident throughout their December 2010 report, "Realizing the Full Potential of Health Information Technology to Improve Healthcare for Americans: The Path Forward," and for the attention given to patients and their health information needs. I am encouraged to see that the technical standards and structures the council recommends will allow for broad and safe use of health information in the future. I also appreciate the report’s openness about the privacy and identity management concerns involved in this significant undertaking.

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.

Effective management and use of health data must contribute to the improvement of the health of individuals, families and societies. I echo the comments of Chris Gibbons of Johns Hopkins Urban Health Institute, who emphasizes that health data includes the life experience of the individual, which encompasses—but is not limited to—clinical encounters.

Through my work with Project HealthDesign, I have learned that clinical data tell only part of the patient’s story. We must also value any data that the patient values. Patient-defined, patient-generated data such as observations of daily living (ODLs) contribute to a full picture of the patient’s health and complement clinical care data.

ODLs serve as personal health sentinels, which give individuals cues about their health or alert them to take personal health action. Because they arise from the patient’s experience, not the clinician’s perception, ODLs may be the most truly patient-centered type of personal health data. I believe the standards and structures PCAST recommends will prove sufficiently robust to handle even these types of data.

From its beginning, Project HealthDesign has advocated a vision of health information technology (HIT) in which applications draw data from many sources and synthesize and present it in ways that guide action. As bodies such as the ONC and FDA deliberate the PCAST recommendations and use them to guide the criteria for demonstrating meaningful use of HIT, I exhort them to hold fast to the fundamental purpose of effective health data management, which is to improve health.

Related resources
• Read the full PCAST report [pdf]
• Read Project HealthDesign National Advisory Committee member Chris Gibbons' [bio] comment on the report
• Read Project HealthDesign National Advisory Committee member John Halamka's [bio] primer on PCAST-related technological terms