Should RHIOs let consumers access their own health information?

Posted October 28, 2008 by Lygeia Ricciardi

Last week at the Health 2.0 conference I saw an explosion of tools and services that help consumers put their own health data to good use. DestinationRx helps you avoid adverse drug events and find cheaper alternatives to the medications you are using; PatientsLikeMe lets you share your experience with a specific health condition, like MS, and learn from others who have it; Keas (the not-yet-live service founded by Adam Bosworth, formerly of Google) will let you manage behaviors like diet through a clear graphical interface.

All of these applications and many others require the same input to provide value: health data about individual consumers. But a comprehensive, accurate, longitudinal health record, especially in electronic form, is hard to come by—which is the gap platforms such as Microsoft’s HealthVault and Google Health are trying to fill.

There is, in theory, another source well-positioned to address that need: RHIOs. Regional Health Information Organizations (RHIOs) aggregate health information about patients electronically from numerous providers, labs, clinics, drug stores, etc. RHIOs are often built primarily to assist providers in delivering better, more-informed care. But they could also serve as a perfect starting point for consumers who want to take a more active role in their own health… if and only if they let consumers access their own data.

Such access should not be assumed. Take the case of New York State, which is spending more than $200 million, largely in tax dollars, on health IT--more than any other state. New York just issued for public comment a set of draft policies. Among them (see Section 5.2 of the “RHIO Policies and Procedures” document), state-funded RHIOs are not required to give consumers access to their own health data, even though the RHIOs are already aggregating it.

To me, this seems like a terrible missed opportunity. If we really want to empower consumers, we need to let them access and use their own health data. Not just to take advantage of PHRs and other cutting-edge services and applications, but also to help them fix potential mistakes in the record, and make informed decisions about how they want their data to be used (or not used). And shouldn’t consumers also be able to take their data with them, regardless of whether they leave a particular provider, employer, insurance company, or state?

Aetna gets it. (See yesterday’s post.) Shouldn’t policymakers? What do you think? 

Better Portability: Aetna and Microsoft’s HealthVault Link Up

Posted October 27, 2008 by Lygeia Ricciardi 

Last week Microsoft announced plans with national insurance company Aetna to make data in the Aetna PHR portable. Soon the six million Aetna members who use the Aetna CareEngine-Powered Personal Health Record will be able to transfer their data directly to Microsoft HealthVault’s health platform, enabling access to a variety of personal health services and applications. Aetna plans to expand the service to its other members (it has a total of 17 million).

This enhanced portability of data is important both because it makes the data available for a variety of applications that interpret and integrate data (like the ones Project HealthDesign grantees are developing) and because it allows consumers to keep their health information with them – even after they leave Aetna.  

Posted October 22, 2008 by Lygeia Ricciardi 

I’m writing from the Health 2.0 conference in San Francisco. What is Health 2.0? It’s a grassroots push through which patients are using social networks and other tools to generate their own health data and transform their role vis a vis the healthcare system. Quite honestly, everyone is still trying to figure out exactly what Health 2.0 is. One analogy is to Web 2.0 a more interactive, collaborative, multimedia approach to the Internet than its first iteration. One thing is clear: with Health 2.0 a shift in the traditional power dynamic in healthcare is moving in favor of patients.

This conference is notable in part because of its popularity. There are 1000 people here. The first Health 2.0 conference was held last fall with about half as many participants. It’s also on the West Coast. Being Washington DC-based, most of the health IT conferences I attend in my part of the country have a different vibe. With the exception, of course, of Project HealthDesign’s Expo last September (which was in Washington DC), most of them seem to be about tweaking technology and policy toward including patients more, not truly putting patients at the “center” of the health system. Maybe it’s the California Myth (and particularly, the proximity to Silicon Valley), but I feel like there’s more openness to change here. A sense that change really is happening, regardless of what we do—but that we can help to accelerate it. More later… 

Posted October 16, 2008 by Lygeia Ricciardi

No matter who you think won this last presidential debate—and a foundation-based blog is not permitted to express an opinion—health IT came out ahead.

Both candidates (again, as they did in the previous debate) supported it in their remarks. McCain said we need to “put more records online,” while Obama said health IT will help us to minimize bureaucracy and make healthcare more efficient. Not surprisingly, in the current climate, this mention of health IT was made in the context of a discussion of improving healthcare economics.

Since many Americans don’t even realize that most of their health records aren’t online, it’s good that the issue is getting airtime in such a prominent forum.

Given my druthers, though, the introduction to the topic for many people would be in a different context, emphasizing the direct benefits of health IT for them—especially better quality care, which could even save their lives in an emergency.

Last week I was talking with a group of New York-based consumer advocacy organizations that are helping to shape public outreach about health IT in their state. “Why is health IT happening now?” they wanted to know. In the worst economic mess since the Great Depression, with a general public distrust of the government and others in power, many Americans may fear that health IT is a way to save money at their expense. 

I know, a presidential debate isn’t the place to cover health IT in depth, and I am indeed appreciative that both candidates’ takes on it are positive and (I presume) more sophisticated (in the last debate Obama mentioned reducing errors as well as costs). But those of us who are concerned with public outreach will need to work carefully to paint a nuanced picture so health IT isn’t perceived predominantly as an economic issue.

I’d be interested to hear any experiences you’ve had with public perception challenges about health IT—and how to overcome them.

Posted October 5, 2008 by Lygeia Ricciardi

It was back in 2006 that Wal-Mart and several other large employers (British Petroleum America, Intel, Pitney Bowes, and Applied Materials) agreed to co-fund Dossia to develop a shared PHR platform for their employees.

Some legal disagreements and a related switch of technology developers from Omnimedix to Indivo, based at Children’s Hospital, Boston, slowed development of the project, but just last week it announced that it’s launching, with the first major roll-out of PHRs to Wal-Mart employees. Other partner companies, which now include AT&T, Cardinal Health, and Sanofi-Aventis, will follow in 2009.

The Dossia/Wal-Mart PHR launch is interesting to watch for a couple of reasons. One is to see how it works from a business perspective. Back when Dossia was announced, Microsoft’s HealthVault and Google Health, which provide similar health information platform services, didn’t yet exist. So now there’s competition--competition available to users for free, no less--unlike Dossia, which cost each of its partners $1.5 million to join. Will any additional companies buy in at that price?

Another critically important issue is consumer trust. Dossia is set up as an independent, non-profit organization. The idea is that, through Dossia, the large employers that fund it are kept at an arm’s length from their employees’ personal health data. Its non-profit status is intended to further reassure users that their data is safe.

Is that enough, though? Privacy of the data is not protected by HIPAA or any other major policy. Participating consumers will have to go on the assurances offered by their employers and Dossia. But back in 2005 the California HealthCare Foundation found that more than half of consumers are concerned that employers might use their health information to limit job opportunities.

In 2007 Wal-Mart (along with WebMD, which is providing its consumer interface) was among several major companies (Pitney Bowes, Dell, IBM, Pfizer, and others) that worked with the California HealthCare Foundation and the Health Privacy Project, with other trusted non-profits, like the Markle Foundation, to develop a set of “Best Practices for Employers Offering PHRs”. One of the most important best practices that emerged was: “Employers should not access or use employees’ individually identifiable health information from the PHR.” There were also points addressing secondary uses of data, limiting the actions of business partners, and portability of health data if an employee changes jobs. It would certainly be in Wal-Mart’s interest to follow the guidelines it helped to develop in order to build employee trust.

Even so, though, given the sensitivity of the employer/employee relationship, we’ll have to see whether consumers choose to store and manage their data through an employer-sponsored service when other options are increasingly available.

Posted October 2, 2008 by Lygeia Ricciardi

October 7-8 – IdentEvent 2008
The conference brings together industry executives, policy and security experts, government officials, analysts, the media and more in a highly focused airing of identity management issues and viewpoints. Project HealthDesign blogger Lygeia Ricciardi will be on a panel addressing privacy in an EHR and PHR context. (Washington, DC)

October 10 – CCHIT Town Hall Teleconference for Consumers on PHR Certification
Free teleconference by the Certification Comission of Health Information Technology that will allow consumers and consumer representatives to gain a better understanding of PHR certification and how they can play a role in the process. Will include a presentation by Dr. Mark Leavitt, chair of CCHIT, and Dr. Jodi Pettit, the staff leader of the PHR Work Group. 4:00 pm ET/ 1:00 pm PT. Participant Dial-In Number: 1 (877) 313-5342 Conference ID Number: 65204557 (Online)

October 13-15 – 2008 AHIMA Annual Convention & Exhibit
The American Health Information and Management Association (AHIMA) has 52,000 members dedicated to the effective management of personal health information needed to deliver quality healthcare to the public. Founded in 1928 to improve the quality of medical records, AHIMA is committed to advancing the HIM profession in an increasingly electronic and global environment through leadership in advocacy, education, certification, and lifelong learning. (Seattle, WA)

October 22-23 – Health 2.0: User-Generated Healthcare
The focus this year is on Web 2.0 technologies, healthcare, and “all points in between”. The conference will include an overview of innovations in search, healthcare-focused social networks and consumer sites, as well as the trends in wellness and personalized medicine taking shape on the horizon.
(San Francisco, CA)

October 27-28 – 2008 Connected Health Symposium
“Who Provides, Who Decides, Who Pays: Consumers, Clinicians and Business Models in the Connected Care Era” Opinion leaders and trend-setters in connected health strategies will provide insight and lead discussions regarding the toughest challenges in healthcare delivery and patient-centered models of care. Speakers include: Grad Conn, Microsoft; Regina Herzlinger, Harvard Business School; Senator John Kerry; Jerry Lin, Google Health; and Cass Sunstein, Harvard Law School. At the Joseph B. Martin Conference Center at Harvard Medical School. (Boston, MA)



A Shift in the Power Dynamic: Health 2.0

Posted October 22, 2008 by Lygeia Ricciardi 

I’m writing from the Health 2.0 conference in San Francisco. What is Health 2.0? It’s a grassroots push through which patients are using social networks and other tools to generate their own health data and transform their role vis a vis the healthcare system. Quite honestly, everyone is still trying to figure out exactly what Health 2.0 is. One analogy is to Web 2.0 a more interactive, collaborative, multimedia approach to the Internet than its first iteration. One thing is clear: with Health 2.0 a shift in the traditional power dynamic in healthcare is moving in favor of patients.

This conference is notable in part because of its popularity. There are 1000 people here. The first Health 2.0 conference was held last fall with about half as many participants. It’s also on the West Coast. Being Washington DC-based, most of the health IT conferences I attend in my part of the country have a different vibe. With the exception, of course, of Project HealthDesign’s Expo last September (which was in Washington DC), most of them seem to be about tweaking technology and policy toward including patients more, not truly putting patients at the “center” of the health system. Maybe it’s the California Myth (and particularly, the proximity to Silicon Valley), but I feel like there’s more openness to change here. A sense that change really is happening, regardless of what we do—but that we can help to accelerate it. More later… 

Our next president supports health IT… but why?

Posted October 16, 2008 by Lygeia Ricciardi

No matter who you think won this last presidential debate—and a foundation-based blog is not permitted to express an opinion—health IT came out ahead.

Both candidates (again, as they did in the previous debate) supported it in their remarks. McCain said we need to “put more records online,” while Obama said health IT will help us to minimize bureaucracy and make healthcare more efficient. Not surprisingly, in the current climate, this mention of health IT was made in the context of a discussion of improving healthcare economics.

Since many Americans don’t even realize that most of their health records aren’t online, it’s good that the issue is getting airtime in such a prominent forum.

Given my druthers, though, the introduction to the topic for many people would be in a different context, emphasizing the direct benefits of health IT for them—especially better quality care, which could even save their lives in an emergency.

Last week I was talking with a group of New York-based consumer advocacy organizations that are helping to shape public outreach about health IT in their state. “Why is health IT happening now?” they wanted to know. In the worst economic mess since the Great Depression, with a general public distrust of the government and others in power, many Americans may fear that health IT is a way to save money at their expense. 

I know, a presidential debate isn’t the place to cover health IT in depth, and I am indeed appreciative that both candidates’ takes on it are positive and (I presume) more sophisticated (in the last debate Obama mentioned reducing errors as well as costs). But those of us who are concerned with public outreach will need to work carefully to paint a nuanced picture so health IT isn’t perceived predominantly as an economic issue.

I’d be interested to hear any experiences you’ve had with public perception challenges about health IT—and how to overcome them.

Can Wal-Mart and Dossia pass the Trust Test?

Posted October 5, 2008 by Lygeia Ricciardi

It was back in 2006 that Wal-Mart and several other large employers (British Petroleum America, Intel, Pitney Bowes, and Applied Materials) agreed to co-fund Dossia to develop a shared PHR platform for their employees.

Some legal disagreements and a related switch of technology developers from Omnimedix to Indivo, based at Children’s Hospital, Boston, slowed development of the project, but just last week it announced that it’s launching, with the first major roll-out of PHRs to Wal-Mart employees. Other partner companies, which now include AT&T, Cardinal Health, and Sanofi-Aventis, will follow in 2009.

The Dossia/Wal-Mart PHR launch is interesting to watch for a couple of reasons. One is to see how it works from a business perspective. Back when Dossia was announced, Microsoft’s HealthVault and Google Health, which provide similar health information platform services, didn’t yet exist. So now there’s competition--competition available to users for free, no less--unlike Dossia, which cost each of its partners $1.5 million to join. Will any additional companies buy in at that price?

Another critically important issue is consumer trust. Dossia is set up as an independent, non-profit organization. The idea is that, through Dossia, the large employers that fund it are kept at an arm’s length from their employees’ personal health data. Its non-profit status is intended to further reassure users that their data is safe.

Is that enough, though? Privacy of the data is not protected by HIPAA or any other major policy. Participating consumers will have to go on the assurances offered by their employers and Dossia. But back in 2005 the California HealthCare Foundation found that more than half of consumers are concerned that employers might use their health information to limit job opportunities.

In 2007 Wal-Mart (along with WebMD, which is providing its consumer interface) was among several major companies (Pitney Bowes, Dell, IBM, Pfizer, and others) that worked with the California HealthCare Foundation and the Health Privacy Project, with other trusted non-profits, like the Markle Foundation, to develop a set of “Best Practices for Employers Offering PHRs”. One of the most important best practices that emerged was: “Employers should not access or use employees’ individually identifiable health information from the PHR.” There were also points addressing secondary uses of data, limiting the actions of business partners, and portability of health data if an employee changes jobs. It would certainly be in Wal-Mart’s interest to follow the guidelines it helped to develop in order to build employee trust.

Even so, though, given the sensitivity of the employer/employee relationship, we’ll have to see whether consumers choose to store and manage their data through an employer-sponsored service when other options are increasingly available.

PHR-Related Events in October

Posted October 2, 2008 by Lygeia Ricciardi

October 7-8 – IdentEvent 2008
The conference brings together industry executives, policy and security experts, government officials, analysts, the media and more in a highly focused airing of identity management issues and viewpoints. Project HealthDesign blogger Lygeia Ricciardi will be on a panel addressing privacy in an EHR and PHR context. (Washington, DC)

October 10 – CCHIT Town Hall Teleconference for Consumers on PHR Certification
Free teleconference by the Certification Comission of Health Information Technology that will allow consumers and consumer representatives to gain a better understanding of PHR certification and how they can play a role in the process. Will include a presentation by Dr. Mark Leavitt, chair of CCHIT, and Dr. Jodi Pettit, the staff leader of the PHR Work Group. 4:00 pm ET/ 1:00 pm PT. Participant Dial-In Number: 1 (877) 313-5342 Conference ID Number: 65204557 (Online)

October 13-15 – 2008 AHIMA Annual Convention & Exhibit
The American Health Information and Management Association (AHIMA) has 52,000 members dedicated to the effective management of personal health information needed to deliver quality healthcare to the public. Founded in 1928 to improve the quality of medical records, AHIMA is committed to advancing the HIM profession in an increasingly electronic and global environment through leadership in advocacy, education, certification, and lifelong learning. (Seattle, WA)

October 22-23 – Health 2.0: User-Generated Healthcare
The focus this year is on Web 2.0 technologies, healthcare, and “all points in between”. The conference will include an overview of innovations in search, healthcare-focused social networks and consumer sites, as well as the trends in wellness and personalized medicine taking shape on the horizon.
(San Francisco, CA)

October 27-28 – 2008 Connected Health Symposium
“Who Provides, Who Decides, Who Pays: Consumers, Clinicians and Business Models in the Connected Care Era” Opinion leaders and trend-setters in connected health strategies will provide insight and lead discussions regarding the toughest challenges in healthcare delivery and patient-centered models of care. Speakers include: Grad Conn, Microsoft; Regina Herzlinger, Harvard Business School; Senator John Kerry; Jerry Lin, Google Health; and Cass Sunstein, Harvard Law School. At the Joseph B. Martin Conference Center at Harvard Medical School. (Boston, MA)