The questions that came to mind immediately for me when I first heard about this story (via radio talk shows as I was driving to and from meetings) included: Isn’t that the gene that was patented? Isn’t that test incredibly expensive and probably not accessible to most women? How is this story relevant to most women?

Later on, I was glad to see that I wasn’t the only one asking these questions. Marketplace explored some of these issues in its coverage.

Starting with the question of relevance to others, let me first note that Jolie’s piece is a terrific message of self-empowerment through knowledge. The problem is, a 1,000-word piece in the Times just cannot hope to be a comprehensive treatment of the issue. A blog post at the Times effectively acknowledged as much the next day, noting that not all relevant mutations are BRCA1 or BRCA2 and that prophylactic mastectomy is not right for all women with the genetic marker. Jolie’s piece did not delve deeply into her decisionmaking process, or into the emotional toll it must have taken on her and her family. She noted the option of having an oopherectomy (removal of the ovaries; the genetic markers also indicate a heightened risk of ovarian cancer) and noted that she opted not to pursue that path at this time. Others (including S4PM’s own Eve Harris … writing about a relative’s choice made several years ago, in another part of the world) have written about the potential for overuse of prophylactic mastectomies when watchful waiting, with or without oopherectomies, may be preferable. (Takeaway: It’s complicated.)

Jolie’s strength in taking control of decisions about her health care is laudable; the next question to consider is whether her example is replicable by individuals without her resources.

The price for the test is now about $4000, though most insurance that covers it yields an out of pocket cost to the patient of $100 (according to Myriad, the company that holds the patents). Experts outside the company have said that the test costs less than $200 to run (thus raising the question of whether insurance premiums for all should be raised, effectively, to underwrite Myriad’s bills for the test … just one of a gazillion microchoices that have to be made about insurance coverage which ultimately hit us all in the pocketbook).

The test is only recommended for women with risk factors (family history, Ashkenazic Jewish heritage, etc.) — about 2% of women in the US per the CDC.

The patents for the BRCA1 and BRCA2 genes have been challenged, and the case was recently argued before the Supremes.

Two problems with the patent lock-in highlighted by the story on the appeal:

• Patients can’t get a “second opinion” and the test sometimes misses mutations of the genes present in some families
• Researchers have gotten a pass from Myriad thus far, but if the patent is upheld, Myriad could potentially block publication of research or sharing of research with patients and families (the concern would be greatest if Myriad were to block publication of research critical of the test)

The Court has to decide between the two sides of the argument. As boiled down by Nina Totenberg:

[Myriad's lawyer] … contends that by locating the gene and isolating it — snipping it out from the rest of the genetic material — Myriad has created a new and patentable thing. He says it’s “no different than allowing a baseball bat or cast iron fence to be patented as a new invention,” even though those items “originated in a tree” or a “rock.”  The baseball bat and cast iron fence are still “human inventions” and thus are patent eligible.

“We do know Myriad did a lot of work,” says New York University law professor Rochelle Dreyfuss, a nationally known patent expert who is not associated with either side in this case. But that’s not enough, she says, because the court still has to answer this question: “Is the thing that’s isolated significantly different from the way that it was when it was in nature?”

[The attorney] representing the patent challengers contends that Myriad is merely following nature’s instructions about where to snip out the gene.

“The structure of the gene, the constituent elements of the gene, the significance of the gene … where the gene starts, where the gene ends, all of those are decisions that nature made,” he says. “Myriad just uncovered the fact that nature had made those decisions.”

This case will likely have wide-ranging ramifications, however it is decided, and will affect health care costs and quality of care in realms far beyond breast cancer.

Jolie, unlike most patients, did not really have to consider cost in her decisionmaking process. She also has the attention of a surgeon who apparently makes house calls, and a supportive partner. These factors, along with the risk factors and other issues that went into her decisionmaking process mean that this is still a personal decision, and that it will be difficult, if not impossible, to standardize a best practice regarding prophylactic double mastectomies and oopherectomies. Nevertheless, kudos to Jolie for going public, for demonstrating powerfully the role of the patient in self-determination, and for making her choice a more acceptable choice for many women who may be affected.

Here’s hoping the pendulum doesn’t swing too far and result in “too many” surgeries. And — perhaps a little further off in the future — here’s hoping that a positive test result for  BRCA1 or BRCA2 can result in gene therapy to “turn off” the mutated gene, or replace it, rather than surgery to remove healthy tissue. That’s a future when information gleaned from genetic tests may be put to use through genetic therapies, a future in which we’ve eliminated the need to agonize over choices regarding surgeries that some today consider barbaric, and others consider potentially life-saving necessary evils.

What do you think? Did Jolie share enough information in her op-ed piece to help others make informed choices? Will her example increase testing and surgeries? Is that a good thing? How long will it take for gene therapy to catch up with genetic testing? What should medicine offer in the meantime?

David Harlow is a health care lawyer and consultant at The Harlow Group LLC, and chairs the Society for Participatory Medicine’s public policy committee. A version of this post first appeared on his home blog, HealthBlawg. You should follow him on Twitter: @healthblawg. 

I consider myself to be an empowered patient who fully participates in my health care, questions my clinicians, and evaluates the risk/benefit of treatment plans presented by my clinicians.

I use the health data my clinician offers, including the reports and notes that are in my electronic health record, and confer with people who have had some experience with the same or similar conditions. I always go one step further and search the web for relevant information that applies to my particular health concerns. I provide feedback to my doctors and never hesitate to speak up and ask questions. I tap the wisdom and advice of my peers and encourage my providers to be participatory.

By the time of my surgery I was fully prepared so that I completely understood what I was getting into. However, I could not anticipate that a cough that I had before the surgery would precipitate into a full blown asthma attack for which I had not prepared. Nor could I have realized that the blood thinners that are automatically administered for two of weeks following hip replacement surgery would be prescribed to me for three months because blood tests indicated that I had a much greater than normal potential for a blood clot. Additionally medication that I take to prevent a recurrence of breast cancer also elevated my risk for clots.

Ever the e-patient, I challenged the doctor to convince me that the risk of life threatening bleeding from blood thinners, if I were to fall or have an accident, was less than the risk of a potentially fatal blood clot. He did.

Following the hip replacement surgery I went to rehab where my medication regiment was so complicated by so many different pills that had to be taken at various intervals that I had to monitor every pill I was given to be sure it was at the right time and in the right dose. I also had to work closely with the medical staff at the rehab to determine which medication, at what dose would keep the cough and the asthma under control. We worked as a team that included the rehab physician and nurse practitioner, the therapists, and my regular PCP. This was true participatory medicine at work.

There are some actions that a participatory patient should always take to insure best outcomes. They include:
1.Prior to going into the hospital for surgery, research all of your options and be sure to ask the surgeon, as well as your PCP and specialists who may be involved, all of the questions that you have. Be sure you are satisfied that you have full information.

2.Appoint a person to be your advocate during those days when you are not well enough to monitor the medications you are being given and the procedures that may be ordered. Be sure that your advocate understands your release instructions so that with the assistance of your advocate, nothing falls through the cracks.

3.As your treatment evolves be sure you understand, and are in agreement with everything that is suggested. Do not accept vague explanations.

4.When you are released from the hospital, be sure that you have full information on the medications prescribed, the treatment process, follow up appointments and any home services to expect. Double check to see that you have prescriptions for all of your medications and a viable way to get those prescriptions filled quickly.

5.As an e-patient you quickly realize that there are always follow up questions even if all of the suggestions above are followed. It is up to you to work collaboratively with your providers to insure that there are open channels of communication for this purpose.

Being a participatory patient is complex because where health is concerned nothing is static. Things change and as the patient member of the healthcare team, you have to be on top of it all and ready to adapt.

A Lifetime of Participatory Medicine Can Start With Maternity Care

Through the Land of Smoke and Mirrors: An e-Patient’s Odyssey (“Mama Lion” part one)

Great news from “Mama Lion” Engelman and daughter (“Mama Lion” part two)

The Unwilling E-Patient: Learning to use my mother-of-a-patient voice

Mama birds: Catherine Fairchild Calhoun and Laurie Strongin

Health Care Hackers

And, if that’s not enough, here’s my compilation of recent posts by powerful moms writing about health and care.

The FDA launched an impressive patient network website this month, after nearly four years of research, focus groups, usability testing and more. The twin goals for this website are promoting the educational mission of the FDA, and promoting opportunities for patient advocacy within the FDA — and earlier in the policymaking process than has been the case historically. James Valentine, Program Analyst in the Office for Health and Constituent Affairs put it simply and forcefully in a recent telephone conversation: “The idea is to engage the patient community, to have the patient voice heard at the FDA.”

Historically, the agency has been working with patients one-on-one, by phone and email, often when an extremely ill patient is seeking information on clinical trials or access to investigational products. The goal is to broaden the field of engagement. The agency has had patient representatives on its advisory committees since the late 1980s — an innovation that came about as part of the response to AIDS/HIV — and patient involvement in the FDA’s processes were further formalized in the late 1990s, as part of Clinton-era cancer initiatives. There are now about two hundred patient representatives involved in over 110 disease areas.

The FDA Safety & Innovation Act (enacted in mid-2012) mandates the involvement of patient representatives in roles beyond those of the advisory committees. Draft procedures for patient involvement are due to be made public in September of this year, according to Valentine. Unlike opportunities for patient involvement in other government agencies, the FDA recognizes patient representatives on advisory committees (and in the new roles) as consultants — just as scientific and clinical experts brought into the FDA process are recognized as consultants — and this means that patients involved in the FDA processes in an official capacity are paid for their time and expenses.

Aside from this new program, the website really just puts a patient-friendly face on an existing set of resources — clinical trials, investigational products, and more — but the improvement is quite welcome.

While the new website is a gateway to the FDA, Valentine assures us that “the Office of Health and Constituent Affairs is still here to help patients navigate the agency.”

The first FDA Patient Network live chat will be a town hall meeting with staff from the Office of Health and Constituent Affairs on May 21 at 3:00 p.m. EDT. Future chats will feature staff from throughout the agency.

Here’s hoping that the FDA will carry through on the promise of online openness.

Take the new website for a spin and share your impressions in the comments.

David Harlow is a health care lawyer and consultant at The Harlow Group LLC, and chairs the Society for Participatory Medicine’s public policy committee. You should follow him on Twitter: @healthblawg. 

Others would take issue with his conclusion, or characterization. A “connectivist” MOOC is based on four principles:

• Aggregation. The whole point of a connectivist MOOC is to provide a starting point for a massive amount of content to be produced in different places online, which is later aggregated as a newsletter or a web page accessible to participants on a regular basis. This is in contrast to traditional courses, where the content is prepared ahead of time.
• Remixing, that is, associating materials created within the course with each other and with materials elsewhere.
• Re-purposing of aggregated and remixed materials to suit the goals of each participant.
• Feeding forward, sharing of re-purposed ideas and content with other participants and the rest of the world.

Sounds great, but is it working? Can it work?

A piece in the current issue of The Washington Monthly took a look and concluded:

Given the current 90 percent dropout rate in most MOOCs, an 8-point gap in completion rates between traditional and online courses offered by community colleges, the 6.5 percent graduation rate even at the respected Western Governors University, and the ambiguity of many other higher education reform ideas, there’s good reason to think that an unbound future might not be so great.

The best American innovations in education were the Land-Grant College Act of 1862, which helped create a system of public universities, and the GI Bill of 1944, which ensured that an entire generation had the money to attend college. This widespread access to the college experience enabled people from working-class backgrounds to advance en masse into professional jobs that required reasoning and logic and extensive knowledge of the world. The question is whether or not we will continue this trend or simply give up and say that a few online classes and specialized training are good enough for the majority of Americans.

In other words: Democratization of higher education – good; MOOCs – not so much.

Why is this relevant to you, gentle reader?

The question is whether the promise of MOOCs, or their inability to deliver, will characterize MOOM — Eric Topol’s neologism, “Massively Open Online Medicine,” used in his HIMSS 2013 keynote.

In health care, a perfect implementation of big data and data analytics, combined with open access for clinicians and patients, would yield a success in MOOM along the lines of a connectivist MOOC.

We are not there yet, but Topol (who, by the way, has joined me and a growing number of others as a member of The Walking Gallery, dedicated to the very relevant themes of patient empowerment and data liberation … see his jacket, Bursting from Within and mine, Friendship Pins) continues to call for a move to population health practices based on individualized information, which would tend to rely on a population of quantified self adherents and e-patients. Unfortunately, at present these are vanguard groups, the minority blazing the way for the majority. There are numerous initiatives afoot seeking to leverage big data, analytics and the health care system to provide population health (a more traditional example: the Accountable Care Organization). Indeed, the future probably holds an even more radical shift away from the health care delivery system as we know it today (Topol spreads the meme of 80% of physicians not being needed in the future) with home-based and wearable sensors replacing much of the current way of practicing diagnostic medicine.

Given the FDA’s recent smoke signals about mHealth guidance being issued in the near future, perhaps that future is in fact inching closer, but it seems to me that it will take some time before the democratization of medicine, or health care, or health can truly take hold. The current health care data privacy and security rules — like so many regulatory constructs — are designed to fight the last war, not for the current field of maneuver. Technology, delivery systems and rules all need to change before real improvement can bloom. Just as in the case of education there remains a high value in traditional higher education that has not yet been replicated in the MOOCs, MOOM has not yet delivered on its promise.

Here’s hoping we don’t have to wait as long as the time between the land grant college act and the GI Bill.

David Harlow is a health care lawyer and consultant at The Harlow Group LLC, and chairs the Society for Participatory Medicine’s public policy committee.  This post first appeared on his home blog, HealthBlawg. You should follow him on Twitter: @healthblawg. 

This is our monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine. Follow the Society on Twitter (@S4PM), Facebook, and LinkedIn.  Here’s how to become a Society member, individual or corporate.

Our publications:

• This blog is e-patients.net. Subscribe via RSS or email, tweets etc.
• Our open-access journal is the Journal of Participatory Medicine (Twitter: @JourPM)

“Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”

Additional resources:

• Our manifesto: the e-Patient White Paper (PDF), in English and Spanish
• The Society’s member list, board and officers, and member listserv archives (members only)
• Our founders
• Guidelines for submitting guest posts about participatory medicine, for this blog
• Author guidelines for submissions to the Journal of Participatory Medicine
• Wikipedia pages for participatory medicine and e-patient

Contact us:

• Volunteering: volunteer@participatorymedicine.org
• Blog: blog@participatorymedicine.org
  • As a Society blog, we do not accept unsolicited guest posts from non-members. See our Guest Posts page.
• General information: info@participatorymedicine.org

We are working on a project here at Carilion on chronic diseases related to Population Health Management related to COPD.

I am specifically working on the education component from a service design perspective and am trying to better understand how COPD patients learn,  where their pain points are related to education, what they need education about, etc. The learnings will result in solutions and recommendations to Carilion Clinic. Of course, the social media and technology component enters in because COPD patients are often older and in western Virigina, on Medicaid and many can’t read although they might have phones. I am also considering that education occurs through conversations online too. I am wondering if you can suggest anything for me to look at related to this topic.

My reply:

I’m working on two upcoming reports that will hopefully be useful to you: how family caregivers use the internet, especially for health; how people living with chronic conditions use the internet, especially for health. We will update and expand on our previous reports about these groups:

Family Caregivers Online (2012)

Peer-to-Peer HealthCare (2011)

Chronic Disease and the Internet (2010)

In case you haven’t yet dug into them, I can also offer a summary of Pew Internet’s health research and links to two blogs I contribute to: e-patients.net and susannahfox.com.

You might also look at some of the work that the California HealthCare Foundation, the Center for Care Innovations, and Ted Eytan, MD, of Kaiser have done related to safety net populations. Here are some links to get you started (I searched for “safety net”):

CHCF.com: safety net

TedEytan.com: safety net

I also recommend looking at some of the work that Ivor Horn, MD, is doing. For example, in this presentation, she tells a compelling story about how patients, caregivers, and clinicians can better connect:

Now: let’s help Rebecka: What else would you share with her?

In less than two years the group has gained so much momentum that it has branched into other media. Dan Munro discussed the #bcsm phenomenon in Forbes.com in March. “What #BCSM does exemplify…is how to be open, direct and cut through the layers of healthcare bureaucracies we’ve spent decades building,” he wrote.

In an email to me Schoger said “To be empowered and engaged…means I know what to do now that this has occurred.  I know how to navigate and who has my back.”  Schoger is one of the 150,000 American women previously treated for early stage breast cancer who are now living with metastatic breast cancer, which is the only fatal kind. “It can occur 5, 10, 15 or even 20 years after a person’s original diagnosis,” according to the Metastatic Breast Cancer Network.

In Forbes, Munro quoted Schoger as saying

#BCSM is true grass roots effort…We have absolutely no intention of reinventing the breast cancer wheel or duplicating the work of other breast cancer organizations. But we have every intention of reshaping how social media can be used to empower women affected by cancer. (emphasis mine)

Symplur measured 2.6 million impressions resulting from #bcsm April 29. Participants in the rapid-paced tweetchat were sad, angry and more focused than ever.

Schoger’s most recent post starts this way:

Friday, April 26, 2013

Cancer: Round Two

This is how things change.

On Tuesday, April 9 we celebrate DH’s (darling husband’s) birthday with an extravagant dinner with friends at our favorite restaurant. We make happy noises about the food and pass around bites so rich it is absurd to even contemplate their arterial impact. We simply go with the moment and taste everything.

The next day I’m at MD Anderson for my yearly visit to the survivorship clinic. This will mark – let’s celebrate anyway – my 15th cancer-free year.  The mammogram shows an anomaly.  We take another view. The second shot is inconclusive.  My nurse practitioner meets me in the exam room and says, “I don’t want to alarm you, but we need to get another an ultrasound to make sure it’s benign.”

I’m not alarmed. Lobular breast cancer, which affects approximately 10 percent of all breast cancer cases, does not image well.  Never has, never will.  It’s sneaky. The cells line up in a single file instead of clustering to form a mass.

Read the rest of this blog post at Schoger’s blog.

For more health care dreams, please see:

What if health care…? (Storify)

Or any of my other #whatifhc posts.

Please take a look at the SPM comment letter on the ONC RFI to Advance Interoperability and HIE. You can learn more about the ONC RFI, and there is an embedded video of Farzad Mostashari, National Coordinator of Health IT speaking about the RFI at HIMSS at that link as well.

Specifically, we proposed:

• Promote Blue Button Plus as a means to empower patients to a degree that current systems do not allow.
• Leverage existing regulatory requirements by building meaningful use of EHRs and HIE into the lexicon of the health care facility surveyor; a Meaningful User should be cited with a deficiency if proper meaningful use would have eliminated the root cause of the deficiency.
• Advance provider directories to support HIE by using the attestation process to link a provider’s Direct address with other contact information in the National Plan and Provider Enumeration System (NPPES, NPI system).
• Increase patient access and use of EHR information by developing patient education programs as well as improving usability of the patient interface.
• Increase standards-based electronic exchange of lab results through a minor regulatory tweak.

The letter is addressed both to ONC and to CMS, in response to their joint request for information. This collaboration within HHS is encouraging, and it may well point to greater interest in leveraging EHRs within CMS.

David Harlow is a health care lawyer and consultant at The Harlow Group LLC, and chairs the Society for Participatory Medicine’s public policy committee.  You should follow him on Twitter: @healthblawg. 

You can feed all sorts of information and data into it all the live long day. But the amount of data you can get out of it is limited. It just stares back at you with its blank, neutral sides. It can tell you things like where it was manufactured, or what color it is, or how many times it’s been moved today. But it can’t tell you what’s inside it, and whether what’s inside needs a little attention.

That is the human body today — you can put things into it, but the amount of information you or I can glean from it is limited.

It’s a frustrating situation, made even more so by the quantified self and personal genetics movements.

How could a personal data movement regarding your health or your body actually make things more frustrating?

In short, because the data we can get from such devices and technology is so limited, especially when compared to the vast richness of data that resides in our bodies.

Personal Health Trackers

Let’s look at some of the personal data trackers available today. One of the more popular ones is called Fitbit. It measures the amount of activity you engage in (e.g., walking or running), and your sleep patterns. By measuring activity, it can also indirectly measure calories burned. But because it is an indirect measure (e.g., it isn’t measuring your heart rate or oxygen intake), the calorie measurement is simply a reasonably accurate estimate. But an estimate nonetheless.

Knowing how many calories you burn is great when you’re walking, jogging, or engaging in some sort of exercise. But we also burn calories when we’re idle, and your calorie burn rate can differ a great deal between watching television, or working at the computer. And if you’re having difficulty with sleep issues, knowing your sleep patterns can also be extremely helpful.

Now, I don’t mean to pick on Fitbit — all of the personal health trackers available today suffer from these same intrinsic flaws.

Personal Genetics

Personal genetics is another category of the quantified self movement that seeks to better understand the machine that is our human body. And the amount of information that a company like 23andme can provide an individual is pretty interesting. The current kit, for only $99, will provide you with over “200 health and traits reports.” They were originally focused on health, but have moved into ancestry in a big way, seeing the popularity of exploring one’s roots.

The ancestry portion tells you your: ancestry composition, genetic relatives, maternal & paternal (if male) lineages, and Neanderthal percentage.

On the health side of things, 23andme will tell you your carrier status for 50 diseases and disease risk for 120 conditions. They can also tell you some traits about yourself (such as your hair and eye color — something a mirror does equally as well), and how well you’ll respond to some types of medications.

However, what 23andme doesn’t make very clear to you is that a lot of these traits and markers and such are based upon only one or two studies. As anyone who knows my writing over the years, I don’t draw any conclusions as a researcher based upon a single study. A single study tells you, “Hey, this is potentially interesting.” A followup study — from a different set of researchers preferably — confirms the initial research and lets you know that initial research may be robust.

I didn’t go through and click on every trait and condition. But on a sample of 20 I did click on, the vast majority were marked as “preliminary research report” on one or two genetic markers. 23andme tells you that this kind of report:

Preliminary Research includes results of studies that still need to be confirmed by the scientific community. It also includes topics where there may be contradictory evidence. The results of these studies are not conclusive.

In other words, a lot of what 23andme is sharing with you may not actually be confirmed in the research. They’re sharing data with you that the scientific community hasn’t yet agreed on or come to any conclusions about. And I can’t say this was for the majority of their health conditions and traits, but it seems like it was for an awful lot of the random ones I checked.

The Black Box Syndrome

A few years ago, I was diagnosed with borderline cholesterol levels. It was a warning sign from my body — shape up or face potential future health problems.

Which was great information to have. But the only way to get a reliable cholesterol reading today is from a doctor-prescribed blood test. Which is generally a pain in the ass to get — and here’s the key — to get regularly.

Today, we’re in a situation where the black box can tell us where it came from (and what color it is), but not how it’s actually doing. It can share with us proxies for the real information we want to get. But those proxies are sad substitutes for the actual data we want from our bodies.

I already know how many calories (on average) I burn a day and I don’t have any sleep problems, so something like the Fitbit is of limited value and interest to me.

Because of the outstanding research issues, I think personal genetics is something also of limited value. It can maybe provide you with a possible heads-up or warning about potential future issues in your life. Or it could give you information that only makes you more anxious. Even if you know you have a 1 in 10 chance of getting XYZ disease, in most cases, there’s not a whole lot you can do to change that odds-ratio.

I don’t want to know any of this. I want real information taken directly from my body. I want my cholesterol levels, in real time, like glucose monitors. I want to know the various levels and activity of my neurochemistry, to track patterns of energy, thought and attention. I don’t want a heart rate monitor, I want a heart health monitor — something that tells me when my heart is doing great, or when it’s got some issues that need further attention.

Heck, I want all of my vital organs monitored — because they are what keep me alive! I want a “cancer detection monitor” that can look for the very earliest signs of cancer and let me know it’s time to go see a doc. I want real-time monitoring of my own pacemaker (if I had one). This is my body and the data it provides should be mine.

Like a “check engine” light in a car warns you to take the care to a mechanic soon, I want a “check engine” light for my body, warning me when I should get in to see a doctor. Like most drivers, I don’t want reams of indecipherable data that I would need a PhD in mechanics to understand. I just want a simple dashboard that gives me live, real data on my body’s internal functioning. Not proxies and estimates of data.

Today, the quantified self movement is a far cry from something so simple and elegant. While knowing how many steps I’ve take today is great (a free pedometer from McDonalds did the same thing nearly a decade ago), knowing the progress I’m making on my cholesterol levels is far more useful and actionable data.

When cars were first invented, they didn’t have a fuel gauge. Drivers needed to estimate on their own how much gas they had left by doing some easy calculations on a piece of paper. Now car dashboards not only tell you how much fuel they have left, they’ll tell you pretty accurately how much farther you can go with that fuel. They can alert you when it’s time to change the oil, or that your brakes need checking.

Today, we’re still doing the simple calculations on paper about our bodies, making guesses and estimates based upon proxy data (because the real data is too hard to get at regularly, and often without a doctor’s visit). I envision a future where we can replace such rudimentary measurement with a refined, simple health dashboard — that gets its data automatically from our bodies. Wouldn’t that be great?

Click the image (or this) to visit his site for more information, and just to say hi. This blog was a new project of his; his final post here was, not surprisingly, Voice of the Patient, two weeks before his death. He was working on the e-patient white paper, and his colleagues (listed in the gray sidebar on his site) finished it in the coming year. Today it’s the cornerstone of our movement.

I wish I’d met him, but what we do here illustrates that the work you do can live beyond you. So, I say: spend your time wisely. Expand what’s possible for humanity.

And when you’re over on his site, wave for us all. :-)

In my journey with multiple sclerosis I find that each member of my very supportive and effective health team experiences the elephant differently. My physical therapist’s goal for me is to strengthen my left leg, ensure my ability to walk safely and balanced with a cane. My neurologist tracks my medication compliance and side effects, my limb strength, my brain scans, my exacerbations. My primary care doc tracks my weight, my immunizations, my cholesterol, my liver enzymes. My acupuncturist balances my chakras. My wife watches my mood, my balance, my energy level. For my 2 year old grandson, it’s “Opa no go kaboom.” My 4 year old grandson wants me to be a jungle animal with balance. The health team views me through the lenses of their particular profession, skill, and compassion. I care about all these things, but they are not me. The parts do not make the whole. Most important to me is that I can live life: be with my family, play music, work, think, write, contribute. I don’t want to be more than a little bit of a burden.

Effective clinicians identify patient problems that they are trained to help solve, develop plans of care, track progress, and communicate in a hand-off to the next clinician or agency. Today’s state of the art technology initiatives (such as Meaningful Use and Blue Button) are successful when they create usable tools for the listing, tracking, and communication of the problem list. Human success would be all health team members contribute to and track the same problem list. Clinicians look for and measure clinical outcomes – no post surgical infection, no readmission, up-to-date immunization, stable blood pressure, compliance with treatment regimen, no errors, etc.

As an e-patient my frame is my health goals and aspirations – maintain a weight of 170 pounds, play music 4-9 hours per week, spend time with at least one of my grandsons every week, travel several times a year with my honey, be pain free, not sad for more than a day at a time, experience no falls with serious injuries, and only short interruptions and minor embarrassments in my normal activity. My outcomes are life outcomes not clinical outcomes.

A pervasive gap exists between the way clinicians and e-patients approach best health: problem resolution and clinical outcomes (clinicians) goals and aspirations and life outcomes (e-patients). My health team knows about my goals and aspirations. I’m fortunate that I could find and stick with team members that appreciate this. We are aligned. I accepted walking with a cane, I started losing weight because my physical therapist and my PCP knew about my life goals and aspirations.

How can patients help their team use the frame of life outcomes? Patients will never think like clinicians. Can clinicians learn to think like patients? My friend, Rebecca Archer, a nurse, asks every patient, “What is the most important thing in your life?” Then she designs her care and services to help them remove barriers to attaining that goal? Is that cool or what?

How can we help clinicians to ask that question and manage the answer? Can we be in the same solar system?

The full article is behind the pay wall for Military Medicine, but the abstract is available and I thought I’d summarize some key points below:

• Veterans in the VA system use the internet less frequently than do other veterans.
• When they do access the internet for health, veterans in the VA system are more likely than other veterans to look for information related to Alzheimer’s disease, memory loss, or dementia.
• Since the study is based on a phone survey, it may not be representative of all veterans because of the number of current homeless veterans who do not have a landline or cell phone. However, there are enough intriguing patterns to suggest the need for further research.

The conclusion is worth quoting in full:

Veterans may be considered a vulnerable population in the context of the digital divide, yet results from this study indicate that there is a potential to engage veterans with health-related services via the internet. It is important to continue to explore the needs of veterans regarding health information to help improve patient-centered care and help veterans better manage their health.

Many thanks to the lead authors of this article, who deserve the credit for the analysis: Thomas K. Houston, Julie E. Volkman, Hua Feng, Kim M. Nazi, and Stephanie L. Shimada.

Please let us know if you have observations or questions about the VA or veterans’ use of the internet and online health resources.

The Patient-Centered Outcomes Research Institute has just appointed four new advisory panels that will help guide hundreds of millions of dollars in research grants. Unfortunately, while PCORI released the new advisers’ names, it neglected to tell the public who the advisory panel members really are.

Let me explain. PCORI says its advisory panels “will be instrumental in helping us refine and prioritize research questions, provide needed scientific and technical expertise [and] offer input on other issues relevant to our mission.” Panel members represent specific stakeholder groups mandated by Congress and are appointed for one year, but they can re-up for another term.

That kind of influence invites attention, and more than 1,000 individuals applied for 82 available spots. Three of the panels correspond to topics that are PCORI national priorities for research: addressing disparities; assessment of prevention, diagnosis and treatment options; and improving healthcare systems. The fourth addresses patient engagement.

So who did PCORI pick? Well, people like Charlotte Collins of Elkridge, MD, representing “patients, caregivers and patient advocates” on the patient engagement panel. That’s the sum total of identifying information given on Ms. Collins and other panel members; there is no educational or professional information at all. I’m a Maryland native, and I’ve never heard of Elkridge, a small community in Howard County whose attractions include proximity to “the world’s largest multiple arched stone railroad bridge with an arc.” But why appoint Ms. Collins as representative of patients and caregivers and not, say, O.P. Ditch, another Elkridge resident who is also an active member of the Howard County Tea Party Patriots?

After some diligent Googling, I think I know why Ms. Collins was named. She is an accomplished African-American woman, an attorney, vice president of policy and programs at the Asthma and Allergy Foundation of America and a lecturer at George Washington University. (That’s from her LinkedIn profile.) In contrast, I doubt the Tea Party Patriots include many PCORI supporters among their number.

The point, of course, is that Ms. Collins’ appointment has nothing to do with where her home is located. PCORI’s providing the public with random names (like advisory panel member “Mark Johnson”) attached to residential addresses, as opposed to providing all genuinely relevant information, is somewhere between meaningless and misleading. It certainly does not constitute a genuine disclosure of which people connected with what organizations (or no organization at all) secured which seats on panels that will be influencing who gets a seven-figure PCORI check.

Full disclosure of my own: I applied for the patient engagement panel, in part because of my role as president-elect of the Society for Participatory Medicine, but I wasn’t chosen. However, while my curiosity about who was selected has a personal element, it’s a minor one. When a panel member is listed as representing the pharmaceutical industry, I’d like to know, and the public should know, which company they represent – one with branded drugs or a generic manufacturer? – and what that individual does for a living – scientist or lobbyist? It’s important to know whether a representative of “clinicians” is a doctor active with the American Medical Association or, as appears to be the case for one panel member, a student studying rehabilitation therapy. And, most important, who was chosen to represent “patients”?

The PCORI staff seems to be filled with earnest, do-gooders. (See my post a few months ago on PCORI “goo-goo’s” for more on that theme.) Perhaps they decided that the Jane Smith who is a patient activist should be indistinguishable in her plain-Jane listing from Jane Smith, MD, PhD, medical school professor.

But PCORI isn’t a church, where all are created equal in the eyes of God, but a politically created, politically governed, controversial dispenser of a very large amount of money that a host of interest groups would like to control. PCORI staff chose the panel members in part by looking at their affiliations, and those connections (or lack of them) should be an immediate part of the public record when the appointments are announced. By being vague, PCORI obfuscates political and power relationships and makes it more difficult for the public and industry stakeholders to either approve of or criticize those choices.

So here’s the test: if PCORI’s vagueness stems from do-gooderism or a lack of public relations polish, all the organization has to do is take the information it possesses on panel members and immediately share it. Make the website transparent and useful. It’s that simple, and readers of this blog can click on the PCORI home page to see whether it happens.

I’m sure Elkridge residents Charlotte Collins (here’s a photo of her at a National Allergy Control Initiative meeting) and O.P. Ditch (here’s a picture of him leading the pledge of allegiance at the Howard County Republican Headquarters opening) would both agree.

I’d like to honor the anniversary by raising some new questions about health data in this cross-post from my personal blog:

Who provides the fuel for the health data fire? Hint: Look in the mirror.

“If iron ore was the raw material that enriched the steel baron Andrew Carnegie in the Industrial Age, personal data is what fuels the barons of the Internet age.” – a line from Somini Sengupta’s article in the Sunday New York Times, “Letting Down Our Guard With Web Privacy.”

I think personal data is fueling health innovation, which is why I hope Sengupta’s article is widely read in the health world. Who are the barons in the new health care enterprise? Who are the serfs? What assumptions are being made and what choices do people have about their health data — and are they aware of them?

In the article, Sengupta profiles Alessandro Acquisti, a behavioral economist who sees himself as an ”observer holding up a mirror to the flaws we cannot always see ourselves” (ditto, and in my view, research can also be a window).

What can we learn by looking in Acquisti’s mirror? An excerpt from the article:

Our browsing habits, search terms, e-mail communication — even our offering of our ZIP codes at the supermarket checkout — reveal bits of information that can be assembled by data companies, usually for the purpose of knowing what sorts of products we’re most likely to buy. The online advertising industry insists that the data is scrambled to make it impossible to identify individuals.

Mr. Acquisti offers a sobering counterpoint. In 2011, he took snapshots with a webcam of nearly 100 students on campus. Within minutes, he had identified about one-third of them using facial recognition software. In addition, for about a fourth of the subjects whom he could identify, he found out enough about them on Facebook to guess at least a portion of their Social Security numbers.

The point of the experiment was to show how easy it is to identify people from the rich trail of data they scatter around the Web, including seemingly harmless pictures. Facebook can be especially valuable for identity thieves, particularly when a user’s birth date is visible to the public.

Does that mean Facebook users should lie about their birthdays (and break Facebook’s terms of service)? Mr. Acquisti demurred. He would say only that there are “complex trade-offs” to be made.

Indeed. I have heard about complex trade-offs before — and I bet you have, too.

What would you trade for a chance to discover whether a new drug will work for you or your loved one? What would you trade for a chance to contribute to an experiment that could improve your life? What data would you share for the greater good, even if there was no direct benefit to you?

Use of aggregated — or highly-identifiable, personal — data is not all done with nefarious intent. It can, in fact, be life-saving. But who holds the power when you face those choices? What are the patterns of behavior for the old way of doing things? How can people learn how to contribute in new ways to health research? What would happen if patients were able to fact-check their records and improve the data fueling innovation?

Join me in reading the article and thinking through these issues. Check out additional resources related to the effects of sharing and exposing personal information, curated by William Gunn and others. Please post observations and questions in the comments.

Note: I don’t want to lose the great insights that Nick Dawson and e-Patient Dave already wrote in the comments on my personal blog, so I’m pasting them here:

Nick:

My first thought, with articles like Ms. Sengupta’s, particularly when couched in the language of your first few paragraphs, is to be part of the voice heralding in the new age of consumerism. More data in the hands of patients, to me, signals a change in the traditional doctor patient relationship. Maybe we should start by calling it a patient doctor relationship.

But this is deeper. Sengupta’s article and your post point to something more meaningful and widespread: the acceptance and promotion of vulnerability as a positive trait. Giving up data also means relinquishing fears about what the data reveals. Arrest records, shopping habits, health data —often (not always) we guard those things against the judgement of others. What happens when we let down those guards in favor of feedback, scientific and societal advancement or shared decision making?

Dave:

I love behavioral economics. Kahneman’s epic Thinking, Fast and Slow is mandatory reading, I think, for anyone who wants to fully grasp the gulf between what people honestly think they want and what they do. it’s not just stupidity or hypocrisy; Kahneman and his partner Tvesky formally established the mechanisms by which the mind loses its grip and does something other than it honestly believes it’s doing. Without comprehending this we have little chance of creating policies that have a snowball’s chance.
____________

I’d hoped to post something about my own data post, to which you linked – it appeared four years ago today. Boy, how the world of health IT has changed since THEN: the ARRA/HITECH incentives had just come on the scene, the words “meaningful use” had barely been signed into law…

… And people were awfully naive about data, at least in health IT. Some were foolishly naive, unaware, clueless but acting confident; others were just charmingly innocent. As far as I can tell, that’s the WHOLE reason people were so shocked about my post: they were naive about things that are routine to data geeks who actually get their hands dirty with the stuff.

Here’s an anti-naivete tip: it’s a big mistake to take data created in one context and read it back in another. That’s what happened in my case four years ago: data recorded for insurance purposes was read back as clinical data. It gave a catastrophically wrong impression. And people were amazed.

If I can, then, take a different tack on your post: you mentioned data fueling innovation; yes, data is fuel, data is combustible. It can be powerful, but if it’s contaminated it can wreck your engine,and if it’s mishandled it can blow up in your face. In my famous case the data was both dirty and mishandled.

I hope I’m not stretching it when I say that like medicine itself, data can work miracles; but if we expect miracles just because it CAN do miracles, we are naive. We can get really disappointed, and when things go wrong people can get upset. Mix that with the illusions going on in our earnest minds, and it’s a setup for disconnect.

It’s “created and maintained by thyroid cancer survivors,” with a long list of physicians as partners and advisors:

This website has been created and is maintained by thyroid cancer survivors.  Since October 1995, we have been developing a network of services that link thyroid cancer survivors and health care professionals around the world.  Our mission is simple:

• To Educate, so we and our families better understand our disease.
• To Participate, so others learn from our experience.
• To Communicate, so we and our health care professionals better understand each others’ needs.
• To Support Research, for a future free of thyroid cancer.

As we in our Society think about the social change that will be required for all providers to welcome good patient communities, a discovery like this merits thought. I notice a couple of things:

• They started in 1995 – almost as old as the ACOR community to which my doctors sent me. It’s a very early community with great longevity
• Robust traffic – the site says they had 576,000 hits last month.
• A link to their medical advisors – dozens of physicians. (Note: run by patients, with physicians as advisors and partners. Participatory!)
• They display an interesting-looking “StudyWeb Acadamic Excellence Award.”  As far as I can tell, that award’s extinct – the last sign of it I found was ten years ago. Anyone know anything? (StudyWeb.com redirects to an education resources site.) I personally think the e-patient world could use some standards about what workds, and I wonder if StudyWeb’s criteria could be resurrected.

What do you see? What can we learn from this organization’s effectiveness and acceptance?

On a separate dimension, look at the site’s long list of links on the left: they’re practical and clearly driven by the reasons people come to the site. The site will never win any awards for prettiness, but it wins prizes from me for being clear and user-centered.

And here’s where I get happy about the visionaries (some say crazies) who formed this Society and blogged in the early years:

“No social network Rx? Malpractice!” (This blog, 2010)

That post by SPM member Roni Zeiger MD posted wondered about some future day when it’ll be considered irresponsible not to recommend that patients consult peers. Citing the now-well-known phrase that “patients are the most underutilized resource in medicine,” Roni said (emphasis added):

…an exponential network effect happens when a group of these resources work together. A social network effect. They ask each other questions, they compare notes, they challenge each other. The discourse is often so rigorous, and so based on the data, it feels like you’re reading a discussion in a top scientific journal. Sometimes a pre-publication edition, since these people attend scientific conferences and keep track of trials that aren’t yet in the published literature.

As the work of SPM continues, I hope we can study what makes some communities become, over time, large and robust and valid from both the patients’ and professionals’ points of view.

p.s. One more point – one of the first lessons I learned about medicine in my odyssey is that it’s vast, vast, vast, like the Pacific – “You can know a ton about the Great Barrier Reef and not know a thing about the ecosystem or customs around Anchorage.” This is a great case in point: with all the work we’ve done in the society in its first four years, this is the first time I’ve ever heard about this large and long-lived patient community.

Bring more!

On Monday, March 25, 2013, ONC, in collaboration with Cornell University, launched a new web platform for obtaining public input to inform health IT strategic planning. Check out the new PlanningRoom site, and provide your thoughts.

ONCs initial focus is on consumer eHealth. To encourage public input to inform the consumer eHealth strategy, ONC is partnering with Cornell University’s eRulemaking Initiative – an academic research group working with Federal agencies to increase public participation in government decision-making.

You can visit PlanningRoom now through May 9, 2013, to participate in discussions and provide comments on specific topics. The site includes discussion topics and questions to help guide the conversation.

I visited the site and left a few comments. It’s well organized and easy to use. I recommend that you all visit and comment.

• What’s new with Gimme my DAM Data #gmdd ? - Wall Street Journal picked the story at SXSW conference
  http://epatientdave.com/2013/03/18/wall-street-journal-picks-up-gimme-my-dam-data-song/#.UUmxrBysh8E
• Blue Button Plus – why should patients fight for it? #bluebuttonplus #abbi
  http://bluebuttonplus.org/history.html
• CommonWell alliance – How can we make sure the alliance is designed so it will give patients their data and will use the agreed on standards: Direct and Blue Button Plus #commonwell

  http://www.commonwellalliance.org/about#vision
  http://thehealthcareblog.com/blog/2013/03/18/the-commonwell-open-discussion-forum/

You can use your favorite Twitter application and just follow the hashtag #s4pm and respond using the same hashtag or use the link

You can follow the discussion even without having a Twitter account. But you will need to login to answer any questions.
I’m looking forward to seeing you there!

Cheryl Clark of Health Leader just posted this on Facebook, from this weekend’s Boston meeting of the Association of Health Care Journalists
(AHCJ):

“For the first time, providers, payers, and patients now have an enormous searchable database containing documents detailing about 8,000 serious federal safety rule violations—many of which have caused serious patient harm or death—at about 1,000 U.S. hospitals since January, 2011.

“The documents, which resulted from federally authorized complaint investigations and are called “2567s,” were released over the weekend by the Centers for Medicare & Medicaid Services [CMS] after a long-standing request from and collaboration with the Association of Health Care Journalists. The AHCJ has organized the document files on a searchable website on its site, http://hospitalinspections.org. …”

The whole article is here: http://www.healthleadersmedia.com/content/QUA-290217/CMS-Unveils-Hospital-Violations-Database