Project Health Design Blog

More on the Markle framework: Patti Brennan's perspective

Posted July 19, 2008 by Lygeia Ricciardi

Oops. We goofed earlier this week and posted a draft version of comments on Connecting for Health’s Common Framework for Networked Personal Information. Here is the revised post:

Patricia Flatley Brennan, RN, PhD, is the Director of Project Health Design. She made the following comments in response to the Markle Foundation's most recent release:

We at Project HealthDesign’s National Program Office are pleased to see the Markle Foundation’s recently released Common Framework for Networked Personal Health Information. The document addresses the technical and conceptual challenges related to exchange of personally identified health data among health care institutions, and between health care institutions and lay people. We are particularly pleased to see this document validating the role of individuals as key participants in health information exchange.

The Markle guideline endorsements by well-known health care stakeholders and the relative newcomers – Google and Microsoft – go a long way toward moving the discussion about data interoperability from hand-wringing about data security into a place where serious policy issues can be thoughtfully discussed and debated. We applaud the document’s call for data portability, and the guidance offered to facilitate technical solutions to the challenges of data portability. As new technology solutions emerge, the guidance provided in this document is likely to insure that concomitant advances are made in the development of technological strategies to implement privacy policies.

Privacy is certainly among those top-of-mind issues for health professionals, policy makers and potential users, and we continue to view privacy as a key issue that must be addressed for personal health records to achieve their potential. Our grantees’ projects are showing how varied the uses and users of PHRs are, and how the wide range of data might be that is relevant to a person wanting to understand his or her health state and communicate salient observations to their clinicians. There are actually three general types of data: data originating from my clinic, like laboratory tests and physician-ordered medications; data directed by my clinician but collected by me, like daily weights or insulin levels; and data defined by me and collected by me, like personal assessments of mood or stamina. Three different types of data challenges those concerned with creating privacy policies to consider not only privacy relevant to sharing of what is traditionally-thought-of as clinical data but also the privacy considerations related to personally-defined, even idiosyncratic, observations deemed valuable to the individual.

The Common Framework for Networked Personal Information provides a useful framework for how both institutions and individuals acquire and can trust information from records. It’s a good starting point to think in even greater depth about the policy implications of a world in which consumers not only access but generate their own data, which in many cases may be quite different from data that have traditionally been used by clinicians. These observations of daily living form a key component of many of our grantee projects, and are an essential part of any true PHR. (See the Health in Everyday Living e-primer.) From the PHD perspective, building on the work Markle has done, more needs to be done to address the full range of information deemed necessary to help a person better understand and engage in healthy behaviors and health care.

Project HealthDesign invites our audience, including those involved in our grantee projects, to comment on these guidelines in light of their personal research and experience.

Project HealthDesign exists to expand the knowledge about and vision of personal health records. It will be critical to expand our understanding of how privacy strategies need to be modified or extended to afford for secure handling and management of personally meaningful, if not medically generated, data. This knowledge is necessary for the sharing of information in ways that benefit patients and their caregivers, and it will be a monumental step toward wide adoption of PHRs and, thus, toward better health for ourselves and our families.

Link to the original version of this post.

Getting the Data into Patients’ Hands: Kaiser and Microsoft’s Partnership

Posted July 7, 2008 by Lygeia Ricciardi

One of the biggest hurdles to wider PHR use is the fact that consumers don’t like to enter their own data. You’ve got to be exceedingly motivated to obtain and type in all of your health conditions, medications, and lab results–and the risk for error in doing so is pretty significant. But right now health records are mostly held by providers and plans who tend to be cautious about letting their data flow beyond their immediate control, whether because of privacy or business concerns.

A few weeks ago Kaiser Permanente and Microsoft announced a partnership that will pilot the use of Microsoft’s HealthVault by Kaiser employees, linking it to Kaiser’s My Health Manager online system. If the pilot goes well, it will be expanded to Kaiser’s 8.5 million members in California and eight other states. The event was covered by the New York Times and the Wall Street Journal

This pilot is notable in part because Kaiser is the largest HMO in the US. But this is not Microsoft’s first major partnership of this kind. Previously, it has partnered with the Mayo Clinic and NewYork-Presbyterian Hospital. Google, which recently launched a similar service, Google Health, has partnered with the Cleveland Clinic and Beth Israel Deaconess Medical Center.

More providers, health systems, and plans need to follow suit in recognizing the value of providing clinical and other health information directly to their patients. In releasing such data to third parties (not necessarily Microsoft and Google) they enable consumers to access new, robust PHR applications that allow individuals to combine the clinical data with information they track about their daily lives in order to better manage their own health. This is a key aspect of the Project HealthDesign vision: consumers are truly free to use their data in the applications of their choice.

Overcoming privacy concerns about the release of health data will require a stronger policy framework, whether established by the government, the private sector, or, ideally, some combination of the two. As we have discussed previously, many new services such as Microsoft’s are not covered by HIPAA.

As far as business concerns go, some current holders of the data are worried that the increased portability of information will make it easier for consumers to switch doctors or plans. Others (including Kaiser) see it as a business advantage. Freeing consumers to use a theoretically unlimited set of applications is likely to make them more satisfied customers that stay with their provider or plan. In addition, such applications may contribute over time to better health and the more efficient use of health care resources.

PHR-Related Events in July

Posted July 1, 2008 by Lygeia Ricciardi 



July 16-19, 2008 – 18th Annual Summer Institute in Nursing Informatics: Building Connections for Patient-Centered Records
The Summer Institute in Nursing Informatics, hosted by the University of Maryland School of Nursing, provides nurses with practical knowledge and skills, exposure to emerging technologies, and interaction with national and international experts. Patti Brennan (Director of Project HealthDesign) will be the closing presenter. (Baltimore, MD)

July 17, 2008 – TIGER Consumer Empowerment/PHR Collaborative Meeting 

The Technology Informatics Guiding Education Reform (TIGER) Initiative is focused on helping the nursing profession to adopt informatics tools, principles, theories and practices that make healthcare safer and more effective, efficient, patient-centered and equitable for all stakeholders. The group meets monthly. (Online)

* And please mark your calendar for the Project HealthDesign showcase on September 17th in Washington, DC.

Markle’s new personal health information framework: building consumer trust

Posted June 26, 2008 by Lygeia Ricciardi

Privacy is one of the most popular topics on this blog. That’s because privacy concerns are one of the biggest roadblocks that stand between the public and a new model of electronic health information sharing that improves the quality of care and empowers individuals.

In the last year we’ve seen dramatic changes in the online health environment. Giants from other industries—including Google and Microsoft—have launched services that let consumers create accounts to collect, store, and share their health data, and feed it into a theoretically limitless number of creative PHR applications, like those Project HealthDesign is prototyping.

This kind of platform service, variations of which are also offered by provider organizations, health plans, Internet companies and employers, is an essential ingredient for better healthcare through IT. Without it, it’s incredibly difficult to pull together information from disparate sources so it can be useful.

A big problem, though, is that many of these new platforms (or “consumer access services,” as Markle calls them) aren’t regulated. Without legal parameters protecting consumers’ privacy, consumer access services could hypothetically use or sell the data for marketing, leave it susceptible to hacker attacks, fail to respond when a privacy breach occurs, or even share it directly with insurers, employers, or others who might use it to discriminate against individuals.

Enter the Markle Foundation’s new framework: Connecting Consumers, Common Framework for Personal Health Information. Building on the Common Framework it released in 2006, which addresses health information sharing among institutions, this new framework is about networks that include individual consumers and the services that enable them to access, share, and use their health information as they choose.

Markle adapts long standing fair information practices to the emerging health IT environment, calling on industry to self regulate by developing sound practices on authentication of consumers, security, audit trails, and the like. The new framework includes four overview documents and 14 specific technology and policy approaches for consumers to access and control their own health information electronically.

The new Markle framework is notable both because of its level of detail and because of the consensus-based approach used to develop it. Groups as diverse as AARP, America’s Health Insurance Plans, Dossia, Google, Intuit, Microsoft, and WebMD signed on.

So who will use it? Many of the major signatories claim already to have incorporated the framework’s points into their products or services—though there are certainly many developers and other entities out there who have not. It may also influence policymakers as they appear (finally!) to be moving toward passing some significant health IT legislation in the weeks or months ahead—actual laws consistent with the framework’s approach could help to give it teeth.

If, through whatever mechanism, the basic guidelines laid out by the framework become the norm, consumers are likely to overcome many of their privacy concerns. According to a survey Markle released with the framework, Americans overwhelmingly believe PHRs could improve their health—and nearly 90% consider privacy as a factor in choosing one.

The PHR as a mirror of daily life

Posted on June 16, 2008 by Lygeia Ricciardi

Project HealthDesign just released a third e-Primer, this one on observations of daily living. It’s about the role PHRs and related applications can play in helping consumers (and their caregivers) to collect and make use of data about every day experience – like how stress, pollen levels, or what we eat for lunch can impact our health.

Susan Promislo also posted on this topic on the Pioneering Ideas blog. As her post mentions, the Project HealthDesign grantee teams are in Washington DC this week to meet as a group and to visit some Members of Congress to discuss the project’s goals and what it has learned so far.

I had a chance to catch up with several of the grantees today. On the topic of observations of daily living, one team, headed by Barbara Massoudi of Research Triangle Institute, is developing a PHR system for at risk sedentary adults. Accompanying Barbara to Washington is a patient tester, Katy Graham, who has been using a pedometer for several months that helps her to track her level of activity and feed data about it into a customized wellness plan.

Katy told me about how the immediate feedback about what she is doing has helped her to be more aware of her actions (it turns out she was actually walking only a fraction of the amount she thought she was walking) and to make small behavior modifications, like parking her car far away from the parking lot entrance, or choosing the stairs over the elevator.

Personally I think it would be immensely helpful to better understand the gap between some of the assumptions I make about my own behavior and the reality, and to have more sophisticated tools to measure my progress than the calendar with a few sparse X’s on it indicating that I jogged on particular days.

The Social Implications of PHR Use

Posted June 9, 2008 by Lygeia Ricciardi

When it comes to PHR adoption, most of the readers of this blog probably worry (if they think about it at all), about how best to encourage the public to adopt PHRs and fully integrate them into daily life. But a presentation by an expert on technology’s social aspects reminded me that new technologies sometimes have unexpected societal impact.

Earlier this year, Dr Bonnie Kaplan, a Yale and University of Chicago-affiliated expert on people’s reactions to new technologies, presented some of her research at an AMIA (American Medical Informatics Association) meeting. As she underscored, medical informatics (including PHRs, telehealth, and telemedicine) raises a number of ethical and social questions. For example, as a society, how do we:

Protect Privacy – What is needed to ensure privacy of an individual’s health information in electronic form? What are the potential tradeoffs between an individual’s privacy and benefit to society through sharing identifiable data for public health, security surveillance, and research, for example?

Ensure Access – What should be done to mitigate the deepening of the “digital divide” through the deployment of new health technologies? And provide rich content appropriate for a broad variety of individuals (who speak different languages, with different literacy levels, physical or mental disabilities, geographic constraints, cultural backgrounds, religious beliefs, and health conditions)?

Manage Consumer Consent – Informed consent for the use of personal health information is an important part of a more comprehensive set of fair information policies and practices. What do individuals need to make consent decisions, and who assures that those decisions are made voluntarily and without coercion?

Facilitate Workforce Reengineering – Widespread adoption of PHRs and related health information technologies will not only alter workflows, but eliminate and create jobs. What does the workforce need to prepare for these shifts?

A lot of those challenges, though daunting, have received a fair amount of attention and debate. Even more interesting to me were some of the other issues Dr Kaplan touched on, such as the affective aspects of new technologies like avatars and virtual coaches, which can help a patient monitor exercise or remember to take medication. The Center for Connected Health in Boston is among those developing such a coach – and studying its impact on users and professional staff alike. As Kaplan points out, such systems can sometimes elicit feelings as diverse as guilt and love in the people who use them.

Dr Sherry Turkle, founder of MIT’s Initiative on Technology and Self, has for decades studied—and expressed concerns about--the blurring line between machines and man (or “systems and self” as she puts it).

Yet others, like Dr Rosalind Picard, also at MIT, are searching for ways to make human-machine interactions as rich and “lifelike” as possible.

An undeniably important aspect of healthcare is human interaction; caring and compassion help patients navigate the inevitable difficulties associated with imperfect health. As technology and healthcare increasingly merge, it will be interesting to see how the social landscape evolves, and if we can achieve an appropriate balance of high tech and high touch in patient care.

Robert Wood Johnson Foundation’s $300 million commitment to improve quality of health care

Posted June 6, 2008 by Lygeia Ricciardi

Central to the promise of PHRs and health IT in general is the improvement of health and health care quality. Yesterday the Robert Wood Johnson Foundation (the primary supporter of Project HealthDesign) announced a major investment to improve quality of care across the US by focusing at the community level.

The $300-million commitment to improve health care in 14 communities, that together cover 11 percent of the U.S. population, is the largest effort of its kind ever undertaken by a US philanthropy. Known as Aligning Forces for Quality, the community-focused program will lift the overall quality of health care, reduce racial and ethnic disparities and provide models for national reform.

Another recent set of awards by the Robert Wood Johnson Foundation that also compliments Project Health Design is through the Health Games Research program. Twelve research teams will explore a wide variety of game platforms and technologies and will help the growing games for health field better understand why certain game designs are compelling and what games offer the most health benefit for which types of people. See the blog post about it by Chinwe Onyekere.

PHR-Related Events in June

Posted June 1, 2008 by Lygeia Ricciardi

June 9 through 13 - National Health IT week
Last month I mentioned the Information Therapy Conference on June 12th and 13th in Washington, DC.
That conference is one part of a larger event Washington: National Health IT week, sponsored by HIMSS. There are about 15 different events taking place under the overarching umbrella—some are education oriented, others are advocacy based. National Health IT Week brings together key health and care constituents—information technology and interconnectivity vendors, hospital and provider organizations, payers, pharmaceutical/biotech companies, government agencies, industry/professional associations, and consumer protection groups—in a unifying call for action. These stakeholders participate in National Health IT Week to strengthen alliances between private industry and the public sector in order to advance health IT adoption with “One Voice, One Vision.” For more detail, see the National Health IT Week web site.

June 17, 2008 - HHS Public Consumer Empowerment Workgroup Meeting 
This is a meeting of one of the workgroups of the American Health Information Community (the Community), run out of the Department of Health. It is made open to the public via webcast—you can ask questions at the end. (Online)

June 19, 2008 – TIGER Consumer Empowerment/PHR Collaborative Meeting 
The Technology Informatics Guiding Education Reform (TIGER) Initiative is focused on helping the nursing profession to adopt informatics tools, principles, theories and practices that make healthcare safer and more effective, efficient, patient-centered and equitable for all stakeholders. Register for their web-based meeting here.

Google Health is Live

Posted May 19 2008 by Lygeia Ricciardi

The buzz about it has stretched back at least a year (and we’ve discussed it on this blog)... As of today, Google Health is live in beta testing.

Though the news is still unfolding (the company presented Google Health at its headquarters in a “Factory Tour of Search” event a couple of hours ago), Reuters just did a brief story describing its features and industry partners.

So far (no real surprise to me) the blogosphere has put a lot of emphasis on privacy issues (see ZDNet, which expresses surprise and concern that Google Health isn’t covered by HIPAA), and TechCrunch, which describes the launch in detail as it happened. User comments on TechCrunch express some significant privacy concerns. It will be interesting to see how general public opinions change over time... and of course we'd love to hear what you--a highly knowledgeable audience--think of it, whether from a privacy, design, or business perspective.

Cell Phone Microscopes

Posted May 19, 2008 by Lygeia Ricciardi

More on cell phones and medical applications--whether for patients, providers, or researchers. This latest article is from The Economist.