This book was recommended to me by colleagues at the California Healthcare Foundation, given my obvious interest in blogging (sort of…). I have had great experience with Web 2.0 tools for leadership and change management in my own work, so I am always interested in others’ experiences.

Like Naked Conversations: How Blogs are Changing the Way Businesses Talk with Customers, this work is stimulating and very supportive of using this new technology. It is geared toward a marketer / journalism audience, and includes a healthy number of success anecdotes of ordinary people that have entered the blogosphere. You can’t help but want to start a blog, or blog more when you hear that a piece of work you posted could garner 30,000 downloads in a month.

Some of the content praised in the book, such as Download with Heather and Jonelle, appears to have fallen by the wayside. This podcast hasn’t been updated since 2006. I think this actually supports the argument that Gillin makes, which is, “we are going to have to work harder for a little while,” because of the immediacy of this communication.

There are great success stories told, such as of GM’s FastLane blog. This one is often mentioned in discussions about Web2.0 and provides a good case study. One thing that interested me is the different treatment of Microsoft Corporation in this book as opposed to Naked Conversations. The sense that I got from Naked Conversations was that the policy was closer to ambivalence than of open directed support. This probably comes the different perspectives of being internal to the conversation (in Robert Scoble’s case) instead of external to it.

I think this book works well for the converted as well as for the pre-converted, though. I learned a little bit more about the currency of links, and the way that people that blog think. One thing I have been grappling with lately is the idea of allowing promotion of commercial products and services. It seems that this is something of a norm among the top bloggers, but then again, this is their career focus. I have tended to subscribe more to a Consumers Union model of information dispersal.

There is also value in learning about the leaders of this movement, including Richard Edelman, of Edelman PR. There are powerhouses in the industry embracing this technology. At the same time, Gillin talks about the disruption that the technology brings, in an analogous way to many other industries:

In order to adjust to an online-driven model, these institutions will need to jettison vast numbers of sales, editorial, production and marketing staff and fundamentally remake their businesses. I think a lot of media executives understand this, but they’re powerless to do anything about it. Their investors don’t have the patience to endure the short-term losses they’ll have to take to make the transition. So they’ll milk profits out of declining markets rather than position themselves for growth in the new ones, which is a sure formula for failure.

I agree with the premise of the book that blogs are not going away, much as e-mail never did:

Ron Bloom, of the PodShow Network calls it the 5/50 phenomenon: Within five years, he believes, 50 percent of the content that people listen to will be generated by other consumers.

I once said that every member in the health care system I worked in would have a blog in 5 years (whether or not we hosted it), because the content in them would add incredible meaning to the health care encounter between patient and physician and family and community. If it’s good for other consumers, it should be good for health care.

Last week, Josh and I went to visit the headquarters of the National Partnership for Women and Families, hosted by Deven McGraw, the organization’s Chief Operating Officer. Deven also happens to be part of PCHIT’s Advisory Group.

We were stimulated to learn more about the National Partnership because of Deven’s experience in health policy and consumer issues in health information technology. For me, I really enjoy learning about the passion and energy that creates organizations dedicated to the empowerment of people. That’s the same energy that fosters patient-centered health care and the technology that supports it.

Deven showed us some of the landmark legislation that the organization’s founders helped enact, including the Pregnancy Discrimination Act, and the Family Medical Leave Act. These protections are ones that we now take for granted; seeing them on a wall is a reminder of the work it took to make them part of our society.

Josh and I then discussed some of our experiences to date about PCHIT, and we talked about factors supporting the adoption (or lack) of Personal Health Records, especially the privacy component. The conversation was a really good one for me, because I come from a health care organization with a very visible commitment to privacy and consumer empowerment.

Deven spoke of her own experience with a PHR offered by her health plan. She indicated that she was not able to sign up to use it, and even counseled her colleagues accordingly, because of ambiguous language in the invitation from the health plan about the use of data entered into the PHR. It says something significant when one of the strongest proponents of of the use of a PHR cannot use the one offered to her by her own health plan.

After our conversation I went back and re-read the privacy policy of Group Health Cooperative’s MyGroupHealth web site. It says:

(ghc.org privacy policy)Group Health Cooperative does not make underwriting or insurance coverage decisions based on our members’ use of the MyGroupHealth site. We do not monitor individual use of health information resources, such as Healthwise® Knowledgebase* or Group Health Cooperative health information pages.

I recall this language as being present since the site was launched in 2000. It has not changed since then. This was a moment of reflection as people have asked, “How has Group Health achieved significant adoption by patients?” We haven’t really seen anything but high adoption. Maybe that’s because of both the policy and the very compelling nature of a connection to the patient’s actual care team, which is what MyGroupHealth offers. I hadn’t really put the two together as requirements before our talk with Deven.

Is it possible that language like this (backed up with behavior to support it) in PHR invitations and privacy notices would improve adoption? And by how much?

We learned in our visit that up to 32 individuals in the National Partnership Office did not adopt a PHR because of this issue.

At the same time, though, Deven and the National Partnership are working to find solutions, through service on the Confidentiality, Privacy, and Security Workgroup of the American Health Information Community. It also houses the Health Information Technology Consumer Principles, which serves as a guide for others.

With thanks to Deven McGraw and the National Partnership for Women and Families for demonstrating, as with the legislation on the wall, what I/we take for granted in one environment is something that still needs to be worked toward for all of society.

If readers have thoughts on their own experiences signing up for PHRs and comments on the invitations they’ve received, feel free to post them here.

December 13th through December 14th:

• The Information Technology & Innovation Foundation: Why a dose of IT May be…. - Another discussion of suggested direction for Health Care IT, and where Interoperability fits
• Neil Calman MD: HIT before HIE (and not without my knowing what?s out there about ME) - A blog post that I have read and referenced a few times about HIT and HIE.
• Medicare Spending, The Physician Workforce, and Beneficiarie’ Quality of Care - Impact of physician workforce mix on Medicare beneficiaries’ care.
• The Atlantic Monthly: Overdose - Argument that the physician shortage is really a glut, of specialists
• Vote on Mass. retail medical clinics delayed again - The Boston Globe - MinuteClinics coming to Massachussetts. Reference to data around standardized sore throat care.
• NPR : Washington, D.C. Facing HIV/AIDS Epidemic - Information about HIV/AIDS in Washington, DC