Matthew Holt (@boltyboy) was joined by regulars: medical historian Mike Magee @drmikemagee, policy & tech expert Vince Kuraitis (@VinceKuraitis), Consumer advocate & CTO of Carium Health, Lygeia Ricciardi (@Lygeia), Suntra Modern Recovery CEO JL Neptune (@JeanLucNeptune) WTF Health host Jessica DaMassa (@jessdamassa) &  fierce patient activist Casey Quinlan (@MightyCasey).

We did indeed touch on that mob riot in the Capitol. We discussed the impeachment, the inauguration, and virtual JPMorgan AND virtual CES and talked about reparations and reconciliation–and how that might influence the whole world of telehealth and primary care. This conversation was wide ranging and fascinating!

If you’d rather listen, the audio is preserved as a weekly podcast available on our iTunes & Spotify channels

Episode 14 of “The THCB Gang” was live-streamed on Thursday, June 18th. Tune in below!

Joining Matthew Holt were four regulars: health futurist Ian Morrison (@seccurve), writer Kim Bellard (@kimbbellard), MD turned leadership coach Maggi Cary (@MargaretCaryMD), Consumer advocate & CTO of Carium Health Lygeia Ricciardi (@Lygeia), and two guests: Emergency Room MD, IT consultant and so much more Medell Briggs (MedellBriggsMD), and patient advocate CEO of Patient Orator, Kistein Monkhouse (@KisteinM). It was a very thoughtful conversation about patient care, the role of social movements, what to do about structural racism in health care, and what new legislation might come from the federal level. You can watch below right now.

If you’d rather listen to the episode, the audio is preserved as a weekly podcast available on our iTunes & Spotify channels — Zoya Khan

This week’s Health 2.0 conference was held for the first time in Washington, DC, plunging Health 2.0’s community of IT geeks into the heart of the land of policy wonks. The feds’ Chief Technology Officer, Aneesh Chopra, joked about the gap between the two cultures: where the Health 2.0 crowd says “there’s an app for that,” the government says “there’s a form for that.”

Chopra and officials from the Department of Health and Human Services outlined their goals and plans related to health IT and extended an invitation for the two communities to work together more closely. The feds described a transformation of the economy and an improvement in the lives of Americans, and gave examples of initiatives that open access to health data and/or provide incentives for innovative uses of it, including:

• The Blue Button Initiative – A CMidentifying S and VA initiative that lets consumers download data for use in a personal health record (PHR)
• Pillbox An NLM and FDA program releasing data that helps in pills
• VAi2 — An $80 million VA innovation competition focused on areas including telehealth and adverse drug events
• Community Health Data Initiative — An HHS and IOM initiative that releases data sets about communities (and which provides the data for the Health 2.0 Developer Challenge).
• Apps for Healthy Kids A White House competition to create software tools and games toimporve kids’ health

As the Department of Health’s Farzad Mostashari said to the crowd, “We’re watching. We want to learn. Show us what is possible.”

But not everyone was impressed. Jamie Heywood of the online health community PatientsLikeMe bristled at the idea that technology entrepreneurs should step up and fix problems that rightly belong to government, such as collecting and analyzing better population health data. “Don’t look to us to save you,” he said, arguing that the feds need to build better markets for innovation. He has said, for example, that government could offer to buy data generated by the private sector that furthers public health goals.

Jamie’s contrarian spirit was refreshing, but his criticism was somewhat misdirected. Based on what I saw, this Administration and its officials are doing a pretty good job with the tasks in their purview. The people at ONC (the Office of the National Coordinator for Health IT) are trying to spend about $2 billion on health IT in intelligent, innovative ways under tight deadlines. Aneesh Chopra, Farzad Mostashari, Todd Park, Josh Seidman, Wil Yu and others who spoke at the conference already get it. They are the proverbial choir. While engaging with them is an excellent start, it’s not enough.

There are two fundamental policy issues that fall outside of health IT but that are at the core of health and healthcare in this country – and therefore critical to health IT’s success, too:

1.) Realigning Financial Incentives. Even after health reform we’re still in deep trouble if healthcare providers get paid based on the volume of patients they see, tests they order, or prescriptions they write. They need to be paid for the quality of their care and for getting results: better health in patients and populations. Get that right and health IT will follow. (While “Meaningful Use” is a valiant attempt to use technology to work around the problem, a more fundamental realignment of the system is needed.)

2.) Addressing the “Bad Healthcare” Market. In her conference remarks, investor Esther Dyson described the market of products and services that work against health and healthy behaviors on the part of consumers: processed foods, cigarettes, TV, cars and gas instead of walking. We need government to end subsidies that support these negative influences, and look for creative ways to support healthy eating, exercise, the growth of communities, and other healthy environmental factors. (IT can help, but here, too, a more radical overhaul is needed.)

So while I was thrilled to see the Health 2.0 community engaging with people like Aneesh and Farzad, in the future it must also reach out to a broader network of policymakers—including Congress and other officials who are better positioned to tackle the root problems with health and healthcare. Wouldn’t it be great if they, too, said they were watching and willing to learn?

Lygeia Ricciardi is the founder of Clear Voice Consulting (www.clear-voice.com) and part of the leadership team of Clinovations (www.clinovations.com). She’ll be commenting on Health 2.0 Goes to Washington. Follow her on Twitter @Lygeia.

A national survey released today by the California HealthCare Foundation shows that 66% of Americans believe we should address privacy worries, but not let them stop us from learning how technology can improve our health care. Amen.

This is particularly heartening news given that the same survey also documents for the first time real consumer benefits from the use of personal health records (PHRs). Seven percent of American now use PHRs, more than double the number in 2008. According to the survey, significant proportions of PHR users feel they know more about their health and health care, ask their doctors questions, feel connected to their doctor, and even take action to improve their health as a result of using a PHR.It gets better. Though current PHR users fit the profile of early adopters of technology in general (wealthy, highly educated, tech-savvy men), it’s the less privileged that report the greatest benefits.  People with multiple chronic conditions, low incomes, and less education are among those most likely to take steps to improve their health as a result of using a PHR. Given that chronic disease accounts for about 75% of the $2.3 billion our nation spends on health every year, that’s a big deal. As economist Jane Sarasohn-Kahn remarked on the findings, PHRs may be able to “bend the cost curve”—if enough people with chronic conditions improve behaviors just a little, they could save enough to repay all $46 billion that the Stimulus Package is putting toward health IT through HITECH.

Consumers Are Headed in the Right Direction

A 2005 California HealthCare Foundation survey found that 67% of Americans were concerned about the privacy of their personal medical records—about the same as today. But the new survey also compares people who are using PHRs to those who aren’t. PHR users are a little less concerned than non-users about the privacy of their health information overall. And only 40% are worried about the information that is actually in their PHRs. Why? There are several possibilities, but it could be in part because familiarity with the tool brings comfort. Before ATMs were commonplace, lots of people were unsure about getting cash through a hole in the wall.

While it’s true that people who don’t use PHRs cite privacy as a top potential barrier (followed by no perceived need), 40% of non-users say they want to use a PHR anyway, and more than half are interested in remote monitoring devices and other health applications. That’s pretty significant when you figure that a large proportion of people consider themselves healthy (and are thus not interested in tracking their health).

The survey also points the way toward greater adoption by asking non-users what factors would contribute to their use of one. Reports include knowing that it comes from a trusted source, strong laws and fines for misuse of information, and encouragement from their doctor. It’s also notable that those whose doctors use an electronic medical record have a higher level of interest in using PHRs—so perhaps the HITECH support for EHR adoption will help tip the balance for PHR adoption, too.

Where Policymakers Need to Go

Privacy is sometimes cited as a–or even the–primary barrier to health IT adoption, and people are concerned about it for good reason. Discrimination, embarrassment, physical harm, and avoidance of needed health care services are among the risks associated with getting it wrong.

But there are some good ways to mitigate privacy risks, including both technical and policy approaches. Among recommendations the California HealthCare Foundation has articulated:

* Congress should develop consistent PHR privacy safeguards (which would include PHRs not covered by HIPAA)
* The Administration should ensure that there is rigorous enforcement of current health privacy rules (HIPAA is notoriously under-enforced)
* The Department of Health and Human Services should raise public awareness of PHR benefits and risks.

This last point is essential because consumers need to consider privacy risks in the greater context of health IT benefits, yet most know very little about either. Again, it’s not that privacy is not important—rather, it’s imperative that we get it right so we don’t forfeit the many benefits of health IT. The new survey helps to document some, but I suspect we’ll see more evidence that health IT can improve the quality, efficiency, and convenience of care, even saving lives.

Lygeia Ricciardi is the founder of Clear Voice Consulting (www.clear-voice.com) and part of the leadership team of Clinovations (www.clinovations.com). Though the views above are her own, she worked closely with the California HealthCare Foundation on shaping and interpreting the survey described above. Follow her on Twitter @Lygeia

I recently applied for life insurance. The broker, whom I’ve never met, asked about my health history. “So you’ve just had a baby,” he began. I asked him how he knew. “You’re on Twitter.”

In the last couple of years concerns about the privacy of online health information have grown, as health care finally catches up to other sectors in its use of information technology (IT). The Stimulus package will pump $19.2 billion into healthcare IT, especially electronic medical records for doctors.

While technology can make your medical records safer in some ways than they’d be in a paper chart (using encryption, fire walls, audit trails, etc.), the fact is, no system is totally fail-safe. And when screw-ups happen, technology tends to super-size them.

A few advocates say the main fix is for people to have as much choice (or “consent”) as possible about sharing particular tidbits of health info. Not a bad place to start, but relying too much on consent is impractical and burdensome.  We also need limits on who can use the info in your record, and for what. The use of these and other widely accepted “fair information practices” will go a long way when it comes to safeguarding the medical record your doctor holds.

But wait. Your virtual health record is so much bigger than that. It’s the iceberg beyond the traditional medical record tip. Part of it is the verbal trail you create on Facebook, on Twitter (evidently!), in an online patient community, via web searches, or on e-mail. But it’s also what you do–what you buy at the grocery store, how fast you drive, maybe even who you talk to on the phone. Right now, most of that information isn’t easily publicly available, and it isn’t linked, but more of it will be. There are plenty of incentives for companies to understand and influence the minutia of your daily life.

The iceberg of health information about you is growing. Recently scientists determined that Agatha Christie suffered from Alzheimer’s just by analyzing the vocabulary in her novels.

As more and more data about each of us is generated, including through tiny sensors that will increasingly be used in clothing and other products, there is more information to glean from it—about our physical health, actions, and even mental health. The MIT Media Lab is working on computer programs that can “read” head movements and facial expressions to understand emotions.

Eventually, the traditional medical record may pale relative to the vast stores of information about your health that can be found in nontraditional ways.  So when we think about health privacy we need to recognize that safeguarding the traditional medical record is only the start. The best policy approaches also protect against discrimination and its consequences. So despite the banners and screams of “Socialist State” in my neighborhood in Washington DC (ooops, there’s more personal information!) the Health Reform Bill, if implemented well—is a strong and necessary step toward protecting individuals against an unavoidable erosion of their health privacy.

Lygeia Ricciardi is the founder of Clear Voice Consulting (www.clear-voice.com) and part of the leadership team of Clinovations (www.clinovations.com) She specializes in strategy, policy and implementation of health IT–with a passionate focus on the consumer. And yes, she is on Twitter: @Lygeia