An uncertain prognosis for personal health records

Health IT adoption has been a frustratingly slow, tough slog, and that is especially true for personal health records.

PHRs have so far gone the way of electronic health records (EHRs): an initial splash of attention followed by glacially slow adoption. PHR technology emerged about a decade ago and, by most accounts, remains far from achieving wide public acceptance. However, prospects might be brightening.

The federal government has had an early stake in PHRs. The Veterans Affairs Department started dabbling with them as early as 2003, with its My HealtheVet program. The Centers for Medicare and Medicaid Services (CMS) launched its first PHR pilot program in 2006 and this year will wrap up two such programs.

PHRs would seem to have intuitive appeal because they promise individuals greater control over their personal medical data. But industry executives say a number of shortcomings have discouraged adoption. For one thing, PHRs tend to lack interactive features that would make them more compelling, such as the ability to schedule appointments or contact doctors. The dearth of online records also inhibits uptake.

Specifically, the modest growth of EHRs limits the amount of data a PHR can draw on.

“Without a robust EHR, there is no way to feed a PHR,” said Jason Fortin, senior research analyst at CSC’s Emerging Practices Group.

More recent public-sector programs aim to fill some of the holes. For example, the multiagency Blue Button initiative, announced by President Barack Obama in August 2010, offers users the ability to download electronic information via My HealtheVet and CMS’ Meanwhile, the Health and Human Services Department’s Direct Project promises easier data exchanges among providers and records applications, which could boost PHRs.

PHRs might also get a lift from the government’s meaningful-use program, which offers financial incentives for doctors and other medical providers to adopt EHRs. Stage 2, set to begin in 2013, will challenge providers to expand patients’ access to health records.

It’s still too soon to tell whether the government’s latest PHR efforts will be enough to push the technology over the acceptance hump. But many experts are hopeful.

A technology with many faces

PHRs defy easy definition. The highly fragmented technology can consist of a stand-alone, PC-based system in which a patient inputs his or her medical history, or it can consist of Web-based systems that allow people to set up personal accounts and pull data from other applications and information sources. Google Health, Microsoft’s HealthVault and products from a number of start-up companies occupy that sector.

Furthermore, health care provider organizations or payers, such as insurance companies or government agencies, also sponsor PHRs. However, they tend to focus on claims data rather than clinical information.

“Right now, PHRs are really all over the map,” said John Moore, founder and managing partner of Chilmark Research, an market analysis firm that focuses on health IT.

Patient portals are another part of the mix. A provider — for example, a health care system — offers patients a view into a portion of their provider-maintained EHRs. The provider retains ownership of the data, and the portal’s scope is typically limited to the sponsoring institution.

The ideal PHR — at least as the technology’s watchers describe it — doesn’t yet exist. For one thing, consumers are looking for more than a place to stash medical data.

“People are not really interested in a digital file cabinet, and I think that has been the problem with a lot of PHRs,” Moore said. “It’s the old, ‘What’s in it for me? How does this help me manage a condition more effectively or interface with my physician or hospital more easily?’”

The PHR wish list includes the ability to easily compile electronic medical data from family doctors, specialists, hospitals and testing labs, among other sources. The system would also allow users to send secure messages to physicians, schedule appointments and order medications.

“There really are no PHRs right now,” said Erica Drazen, managing director of CSC’s Emerging Practices Group. “There are things that have functionality that will eventually become PHRs. But they are not true PHRs.”

Adoption of the not-quite PHRs has been lackluster. Fortin said studies of PHR and patient portal projects indicate that about 7 percent to 10 percent of the intended audience uses them. But — and this is a big caveat — the studies include one-time users, so the number of people who regularly use a PHR or patient portal is much lower than the survey numbers indicate, Fortin said.

Pushing the Blue Button

A handful of federal initiatives could be the key to PHRs’ future. The Blue Button effort, for one, aims to make more electronic data available for consumer systems.

Last summer, VA launched a beta version of the Blue Button download feature in conjunction with My HealtheVet. Patients can download wellness reminders, a list of past and upcoming VA appointments, and their medication history. Downloads also include data a veteran self-enters via My HealtheVet, such as allergies, medical events, immunizations and test results.

The latter component complicates Blue Button, said Jim Strickland, a veterans’ advocate. The task of including a broader swath of information — such as lab and X-ray reports or physician notes — involves veterans visiting a VA clinic or hospital and requesting paper records. The request may take six months or longer to fulfill, he said. Once the records arrive, the veteran has to enter the data into his or her record.

“I have to punch in all that data...and upload it to the Blue Button cloud,” Strickland said. “If I do that successfully, I can download my data.”

Kim Nazi, performance and evaluation manager for My HealtheVet, said VA officials recognize that veterans would like to have additional types of data available electronically.

“We are well aware of that desire and will work through the process of adding additional data classes,” she said.

Future releases of VA’s Blue Button will include information on allergies and chemistry/hematology lab results. As additional types of information become available, fewer veterans will need to request paper copies of their records, VA officials said.

As of April, VA’s Blue Button has racked up more than half a million downloads, said Peter Levin, VA’s chief technology officer. More than 210,000 unique registrants have used the Blue Button feature, he added. Some 1.2 million My HealtheVet registrants are eligible to use it.

Levin said Blue Button use has exceeded his expectations. “I had originally sold this idea to the [VA] secretary based on a number far lower,” he said.

In October 2010, CMS kicked off its own Blue Button capability, which lets Medicare beneficiaries download their medical records.

A CMS spokesman said more than 59,000 beneficiaries have downloaded Medicare’s Blue Button data. Beneficiaries can access claims information — currently without diagnosis information — and data they have entered themselves, such as information on medications and allergies, he added.

Creating a conduit for information

Having access to electronic information from provider or payer sources is one thing; getting that information into a PHR is another issue.

With Medicare’s Blue Button, users can download a file to their computers and then upload the data into Microsoft’s HealthVault, the CMS spokesman said.

“There is only one PHR vendor we know of to date that can upload the data from a Blue Button download, and that is Microsoft HealthVault,” he added.

According to VA’s Innovation Initiative website, veterans can import and export Blue Button data to and from HealthVault. That data can be entered into Google’s PHR, but “direct import/export is not supported,” the site notes.

The open-source Direct Project, which stems from HHS’ Nationwide Health Information Network, could make it simpler to move data into PHRs. Direct Project debuted last year and seeks to establish a mechanism for the secure exchange of heath data via the Internet.

Dr. Steven Waldren, director of the American Academy of Family Physicians’ Center for Health IT, said Direct Project could provide a “conduit for shared data that can populate the PHR.”

Waldren said Google’s PHR and Microsoft’s HealthVault have created application programming interfaces to send information to PHRs. But the different PHRs and APIs create a different workflow for each system. Direct Project provides a transport method that works regardless of the PHR or patient portal involved, he added.

“Implement Direct [Project], and you are going to get all of us,” said Sean Nolan, chief software architect at Microsoft’s Health Solutions Group, referring to HealthVault and other PHRs that support Direct Project. “Direct has a huge potential for making it much easier for people to get the information they need.”

Direct Project also seeks to address provider communications, another perceived PHR gap. Earlier this year, Microsoft announced an encrypted e-mail feature for HealthVault based on Direct Project’s security protocols. The upgrade lets physicians send a patient’s clinical data to an e-mail address created in HealthVault.

Dr. John Halamka, CIO at Beth Israel Deaconess Medical Center in Boston and co-chairman of the federal Health IT Standards Committee, said the hospital has started a Direct Project pilot program using HealthVault. A test sent Halamka’s records through a Direct Project gateway installed at the hospital to a secure HealthVault e-mail address.

“It’s a pilot at this point, but I hope all PHR vendors adopt Direct as the means for EHRs to push data to patients,” Halamka said.

That would be one step toward making PHRs more usable.

PHR vs. EHR: Which should be the top priority?

Where should industry and government focus their health IT investments: on electronic health records or the personal health records that depend on them?

As PHRs struggle to catch on, one of the strikes against them is the limited electronic health dataset. EHRs would help fuel PHRs. But EHRs are still battling for acceptance.

Some observers believe the focus should remain on EHRs for the present. “EHR is much more obtainable in a short period of time,” said Joe Brown, president of Accelera Solutions, an IT solutions provider.

Erica Drazen, managing director of CSC’s Emerging Practices Group, agrees. “For the near term, investment in EHRs is the thing to do,” she said.

Other executives believe work should proceed on both simultaneously. “I don’t think the two need to be mutually exclusive,” said Mike Jackson, director of Adobe’s health care solutions group. He said EHRs are evolving to include PHRs as part of the infrastructure.

“EHRs and PHRs really need to happen in parallel so we can start to create a web of connectivity that people can leverage and count on to get better care,” said Sean Nolan, chief software architect at Microsoft’s Health Solutions Group.

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Reader comments

Fri, May 6, 2011 Debbie Northern Virginia

Good Article. There has been a ton of Government money spent on this issue with still a long way to go. However, my family is now using MedeFile's service and found it to be light years ahead of the others! THEY go get your records and upload ANY medium, and refresh every few months to keep you current! And the Alerts for medication interactions, or even to remind of an appointment, etc. are just a few of the other extras this web-based system provides!

Thu, May 5, 2011 Jeremy Engdahl-Johnson New York, NY

From the ICD-10 deadline to the need for medical scribes, the hurdles facing EHR implementation are numerous.

Tue, May 3, 2011 Jeff Brandt portland, or

John, good article. EHR or PHR and BlueButton or Direct Project is not the real question here. We need an eco-system to connect these systems and records together. HealthVault is doing a great job on the commercial side and so are the others such as the VA or ONC, HHS. We are at the infancy of exchanging data in healthcare but the main critical issue is getting the records in electronic form. EHR have to be implemented and used correctly to effectively accomplish data exchange. Next we need to hold back on government intervention, The FDA just classified system that communicate with some PHR like HealthVault as a class 1 medical device. If we are going to change healthcare let's not stop the momentum quite yet. As with most system we will have to go through a few iterations before we find the correct one. We just have to design them so the interfaces can be easily changed. It is an exciting time for healthcare, and all mentioned are doing a great job so that we are all winners of the effort. Jeff Brandt

Tue, May 3, 2011 Kevin Gaza Indianapolis

I would think that you have to look at what the longterm drivers would be for a consumer. That should be job changes (e.g. new medical plan), and family history (e.g. I want my children's children to have access to my medical profile so that they can anticipate what health trends they may experience in their life as a function of their genes through me). Unfortuntately these are drivers that take quite some time, thus my guess is that some sort of government based requirement is going to be pushed by Google and Microsoft in order to get the market moving.

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