Personal Health Records (PHR) hitting the Big Time!

There is a sudden burst of activity it seems on the PHR front!

We have first:

Empowering consumers with their health records

Canada to take a close look at PHRs

April 17, 2008 - As the Internet has enabled consumers to manage important aspects of their personal lives from the relative comfort of their home, it is no surprise that Canadians are becoming increasingly intrigued by the prospect of being able to view and manage their health information using emerging personal health records (PHR) technologies.

Recent announcements by major players in the IT industry suggest such capabilities are just around the corner. Recognizing developments in this area are moving quickly, Canada's federal, provincial and territorial health ministries have expressed support for Canada Health Infoway's (Infoway) plan to discuss personal health record solutions with interested vendors and to explore how these technologies could be made available to Canadians in a secure manner.

"Providing Canadians and their health care providers with appropriate and secure access to their health information has been our goal from the onset," said Richard Alvarez, President and CEO of Canada Health Infoway, the federally-funded, independent, not-for-profit organization that is leading the adoption of electronic health records across Canada. "The prospect of seeing consumer health solutions in the Canadian marketplace is an exciting development indeed. It is also critical that we ensure these offerings provide the appropriate level of trust, protecting the privacy and security of Canadians' health information."

"The Government of Canada, through its funding of Infoway, is investing in the national transition from paper to electronic health records," said the Honourable Tony Clement, Federal Minister of Health. "I am pleased that personal health record solutions will complement and leverage our investments to date in e-health solutions. With the appropriate ground work in place, PHRs will ultimately deliver greater value to Canadian patients."

"Canadians are taking increasingly active roles in managing their chronic diseases and preventing illness from setting in," said Chris d'Entremont, Minister of Health for Nova Scotia, who serves as the liaison minister between Infoway and federal, provincial and territorial health ministers. "Our investments in the implementation of electronic health records are crucial to our goal of ensuring Canadians have access to the information and tools they need to manage their care. The onset of personal health record solutions can accelerate our desire to enable patients to have these capabilities."

A number of technology vendors have expressed interest in creating solutions that will equip Canadians with the technology they need to view their medical data. Working with Infoway and its partners will help ensure the solutions available to Canadians will leverage the progress made in implementing electronic health record projects across Canada. Using technology solutions that are compatible with Infoway's blueprint will ensure patient privacy and security provisions are adhered to.

More here:

http://www.infoway-inforoute.ca/en/News-Events/InTheNews_long.aspx?UID=313

And

Warning on Storage of Health Records

By STEVE LOHR

In an article in The New England Journal of Medicine, two leading researchers warn that the entry of big companies like Microsoft and Google into the field of personal health records could drastically alter the practice of clinical research and raise new challenges to the privacy of patient records.

The authors, Dr. Kenneth D. Mandl and Dr. Isaac S. Kohane, are longtime proponents of the benefits of electronic patient records to improve care and help individuals make smarter health decisions.

But their concern, stated in the article published Wednesday and in an interview, is that the medical profession and policy makers have not begun to grapple with the implications of companies like Microsoft and Google becoming the hosts for vast stores of patient information.

The arrival of these new corporate entrants, the authors write, promises to bring “a seismic change” in the control and stewardship of patient information.

Today, most patient records remain within the health system — in doctors’ offices, hospitals, clinics, health maintenance organizations and pharmacy networks. Federal regulations govern how personal information can be shared among health institutions and insurers, and the rules restrict how such information can be mined for medical research. One requirement is that researchers have no access to individual patients’ identities.

…..

The authors say that consumer control of personal data under the new, unregulated Web systems could open the door to all kinds of marketing and false advertising from parties eager for valuable patient information.

Despite their warnings, Dr. Mandl and Dr. Kohane are enthusiastic about the potential benefits of Web-based personal health records, including a patient population of better-informed, more personally responsible health consumers.

…..

Peter Neupert, the vice president in charge of Microsoft’s health group, said that he admired the authors and that they raised some important issues. But he resisted the suggestion of extending Hipaa to newcomers like Microsoft and Google.

“Philosophically and politically, I am skeptical of the concept of paternalism,” Mr. Neupert said in an e-mail response to the article, which he was sent, and to the authors’ comments. “It never turns out to be ‘limited.’ ”

…..

Dr. Mandl and Dr. Kohane are physicians and researchers at Children’s Hospital Boston, the primary pediatric teaching hospital of the Harvard Medical School.

Read the full article here:

http://www.nytimes.com/2008/04/17/business/17record.html?_r=2&scp=10&sq=health+care&st=nyt&oref=slogin&oref=slogin

And

Feds lay groundwork for PHR adoption

By Diana Manos, Senior Editor 04/16/08

Members of a federal healthcare IT advisory panel workgroup considered recommendations Tuesday from the Centers for Disease Control and Prevention on how best to push personal health records.

CDC is one of the few federal agencies making headway in using the Internet in all its various forms to promote health messages.

…..

Federal efforts to promote PHRs should include working with PHR providers to find out the current level of satisfaction, as well as gathering quantitative data on performance through formal user testing, Nall said.

In addition, the CDC recommended that AHIC should:

• conduct research to determine the health impact of PHRs;

• determine who is actually using PHRs;

• use social media, or interactive online methods, to engage existing and potential PHR users;

• test PHR promotion plans on blogs to find out public reaction;

• establish a panel of social media leaders, PHR providers and marketing leaders to work on the promotion plan;

• and engage stakeholders early in process.

Nall said she will run CDC's recommendations through several top healthcare blogs to get public feedback prior to the workgroup's next meeting.

Workgroup Co-Chairman Anne-Marie Robertson said the group is charged with encouraging the uptake of PHRs well into the future. She recognized there is "a huge amount of work going on as major players in the industry are engaging in building PHRs and trying to market them. " She was uncertain as to whether AHIC should conduct its own market research.

…..

Read full article here:

http://www.healthcareitnews.com/story.cms?id=9077

It seems clear from all this activity – with all this appearing in a single week – the idea of PHRs is really taking off and being actively discussed and thought through.

The 2020 Summit HealthBook proposal is a reasonable first thought – but more flesh is needed on these bones, and as I said recently we don’t want to reinvent any wheels here. There are a huge number of variations on the theme out there!

To me a core issue is how much PHR and how much social networking is the right mix in a HealtBook. Both technologies seem to have transformative capabilities – it will be interesting indeed to see how things evolve.

One of the things the 2020 Summit should have addressed is how the use Medicare Australia’s databases to start such things in Australia. I wonder did someone raise the idea?

David.