And yet changing culture amongst physicians remains challenging, for a variety of reasons (some good, some not so good).  For example, it takes an average of 17 years until physicians adopt proven best practices.  Hopefully, Participatory Medicine won’t take so long.

Yet, there are many of my colleagues who are already adherents to the model of Participatory Medicine, although they may not call it that. These physicians work hard to engage patients in their healthcare, understanding that healthcare is not a spectator sport.  They have a mutually respectful relationship with their patients, encourage them to search for online health information, point them to online support communities, communicate with them online, and invite patients to view their records both when in the office and at home.

Why practice Participatory Medicine?  Everyone has their own motivations.  Some of our stories (including mine) are here.

Do you support these ideals?  Are you practicing Participatory Medicine?  If you are, let us hear your voice! Join the SPM, submit your studies to the Journal, submit blog entries to e-Patients.net, spread the word, teach your patients, and teach your colleagues.  Like any movement, this won’t happen without your active involvement.

I have argued (here and here on e-patients.net, and here on Reproductive Health Reality Check) that strategies that involve increased participation by women and families in maternity care hold major potential for improving our rather dismal maternal and infant health outcomes.

A study reported in the February issue of The International Journal of Gynecology & Obstetrics highlights a major obstacle to implementing consumer-led health strategies: lack of comparative effectiveness research supporting their use.

The researchers analyzed all Cochrane Systematic Reviews addressing pregnancy, childbirth, newborns, or children up to age five. They categorized each systematic review by the level of consumer involvement versus health care system involvement the intervention required. They found that 62% of Pregnancy and Childbirth reviews, 94% of Neonatal reviews, and 71% of Children’s Health reviews addressed interventions that involved no consumer participation, such as cesarean surgical techniques, or intensive care treatments. Interventions that could be implemented within the community (such as nutritional programs) or that involved woman- or family-centered health care (e.g., labor support techniques, family-centered pediatric approaches) were far less likely to be studied. The researchers concluded:

The vast majority of research is performed on interventions that are solely in the realm of the providers. Maternal and child health research needs to be directed toward innovative interventions involving consumer participation, particularly those that can be implemented in middle- and low-income countries where the accessibility and quality of the health systems are poor.

This study highlights one of the major systemic biases we see in research. When so much of our research comes from academic medical institutions, what happens outside of those institutions – even if it has a far greater potential impact on the health and wellbeing of the institution’s beneficiaries – doesn’t get studied much. Nor do interventions that can happen within institutions (e.g. doula support in labor) but challenge the institutional hierarchy, which too often puts patients and families at the bottom.

One area in which we need far more research is perinatal education. Few studies evaluate strategies to educate, engage, and inform women. In addition, according to a review in the current issue of The Journal of Perinatal Education, even when researchers do evaluate perinatal information giving and education, they tend to evaluate approaches that accommodate medical concepts of efficiency (e.g. leaflets or DVDs) rather than meet women’s own stated needs and preferences (e.g. opportunities to discuss options in depth with their care providers or in small peer groups facilitated by knowledgeable professionals).

Pregnant women and new mothers are avid seekers of health information – online, in childbirth education classes, from health care providers, and in their communities. This natural impulse to take responsibility for their health, connect with other women, and engage in their care is currently being overwhelmed by the application of one-size-fits-all maternity care policies, including mandated cesarean surgery for women with risk factors or more subtle threats to autonomy like restricting mobility, denying access to food and drink, and excluding family members and other support people from care settings.

Empowered, informed, engaged consumers, individually or collectively, can be effective at overcoming these barriers to safe, effective care. In fact, it sometimes seems to be the only force driving meaningful change. Fifty years ago, the American Society for Psychoprophylaxis in Obstetrics (now Lamaze International) helped lead a charge to let fathers into the delivery room and challenged the harmful, demeaning childbirth routines that prevailed as standard practice. Just last month, CNN reported the happy outcome for a woman who avoided cesarean surgery she did not need or want. In advocating for her own care, she has inspired a generation of other women facing vaginal birth bans in their own communities.

Consumers are the least powerful contingent in the health care system, even though our knowledge, attitudes and actions could be the most important influence on our own health and safety. It’s time for major paradigm shifts in research, policy, and practice.

References:

Belizán, J. M., Belizán, M., Mazzoni, A., Cafferata, M. L., Wale, J., Jeffrey, C., et al. (2010). Maternal and child health research focusing on interventions that involve consumer participation. International Journal of Gynecology & Obstetrics, 108(2), 154-155.

Nolan, M. L. (2009). Education and information giving in pregnancy: A review of qualitative research, The Journal of Perinatal Education, 18(4), 21-30.

Danny: An important moment happened a few months ago during office hours – important because it brought a profound shift in Dave’s view of the doctor-patient relationship. And that’s a vital part of participatory medicine.

Dave: As many of you know, my primary physician is Dr. Danny Sands. I was there for my annual check-up.*

He was late as usual – regardless of the economic pressures on doctors today, he declines to rush: he spends as much time with each patient as he finds necessary. I’m accustomed to this, so I bring work to do while I wait. (There are many aspects to being an empowered partner engaged in the healthcare system!)

Our visit went fine: nothing dramatic, a few minor complaints, updates on issues we’d covered before. My cancer’s in the past – I’m now just an ordinary middle-aged schlumpf. As our visit came to a close, the doctor’s main advice was “You should lose weight.”

And that’s where it got interesting.  Because earlier in the visit he’d mentioned a patient he’d seen earlier in the day, whom he’d lectured pretty strongly about not sticking to the plan. But after he discussed that my weight had gone up, in a really not-so-good way, he just finished the visit – with no lecture.

I thought, that’s odd: he lectured the other guy, not me. Feeling bold, I spoke up: “So, why aren’t you harder on me about my weight?”

Danny: I stopped, reflected, and realized: I’m hard on someone if they complain about things resulting from a lifestyle issue, and aren’t doing anything about it. Dave wasn’t making the best choices he could, but he doesn’t complain.

But I thought, why not document this? So I sat back down at the screen, turned it so the patient could see it, and following the five items we’d already discussed, I typed: “6: Obesity.”

I added comments about his need to address it, and told him verbally: “It’s my job to give you the information, but you know what you need to do.”

Dave: That was a perfect expression of our 2008 post about Stanley Feld’s “Physicians are coaches. Patients are players,” echoed here in July by ICSI president Kent Bottles. (Great comments on that post.)

So the interesting question to me is, why was the coach hard on the other guy, and not me?

Danny: People respond to information. I use different approaches for different patients: (some need a nag, some just need the information; in industrial settings all we need to do is let people know their productivity and they’ll know what to do. Same thing in medicine: If you tell a doctor they have a low proportion of patients who’ve had a necessary test, they will improve their performance, but without the data they won’t do it. There are patients like that too.

I’d probably misjudged Dave’s need on that scale. He had the information but still wasn’t acting on it.  I could have been harder on him.  While some patients respond well to my tough remarks, there are patients who don’t take to that at all well.

Dave: And it dawned on me: in my relationship with him, I’d been making it all about me – it hadn’t dawned on me that he needs the people skills to deal with the whole spectrum of patient personalities.

This is fascinating to me. The more I learn about being a full colleague in my care, responsible not just for my own health but for our relationship, the more I appreciate the range of skills clinicians need.

When I got really really bad news about terminal cancer, Dr. Sands was supremely calm, gentle and clear; but day by day, he also needs agility and grace in adapting his style. Oh yeah, then there’s the medical knowledge. That too.
___________

Participatory Medicine takeaways:

• Patients: You might want to think about being responsible for yourself, even if your health professionals aren’t leaning on you. Maybe you’re not the center of their universe! The physician is responsible for a thousand bodies; you’re the master of one.
• Physicians: Encouraging behavior change is difficult, and there’s not a single model for every patient.  While we try to tailor our approach to what we think each patient needs, we sometimes miss the mark.  It’s never too late to make mid-course corrections so we can best help our patients.

Remember the definition: “Participatory medicine is a cooperative model of healthcare that encourages and expects active involvement by all connected parties (patients, caregivers, healthcare professionals, etc.) as integral to the full continuum of care.”

In a sense we knew that, but our exchange this appointment brought it home in a new way. And we both left feeling more empowered.

======

^{“preventive health evaluation,” in doctor-speak … the least important part is the physical exam – 80% of the info we get is from the talking and listening, 10% from tests, 10% from the physical. Talking & listening tells us what we should be looking for in the exam.}

The glitch came to light when a doctor noticed that a female veteran had a prescription for erectile dysfunction. Hm.

I spoke with the writer today about data quality in health IT. Only a few of my words made it into the article, but an eerie parallel came to mind:

I’m class secretary for my college class, so I occasionally go into the alumni database. This week I clicked the link to update my profile, and lo, somebody else’s came to the screen!

I was seeing (and editing) the data for the next person alphabetically, not my own.

Here’s the thing: this is MIT’s alumni database. Yeah, the geek school. Accidentally letting me edit somebody else’s info.

Reality: data doesn’t flow automatically to the right place. You gotta engineer the workflow carefully, and it’s a good idea to build in safety checks.

This doesn’t change my belief that good quality data, well managed can improve things. (I didn’t say “solve everything,” I said “improve.”) Airlines got it figured out (you never pull up the wrong person’s reservation), banks got it figured out (long ago you might get the wrong person’s statement, but no more), etc etc.

As we work on health IT, let’s:

1. Build reliability into the workflow. (Methods exist. Use them.)
2. Check frequently for glitches
3. Don’t be shocked when one appears. Tell people, and fix it.

p.s. I notified the Alumni Association and it was fixed within a day.

#Fail

Empowered patients know they’re responsible for their choice of care providers. We usually follow our clinicians’ advice, but we take responsibility for it.

That’s hard when a quality agency obscures its findings. So I object to a reality reported this week by AHCJ, the Association of Health Care Journalists:  Joint Commission site obscures information. Excerpt: (emphasis added)
___________

“Among the problems identified:

• Hospitals with any level of accreditation are given “The Gold Seal of Approval” – even those whose accreditation is conditional or at risk of being denied.
• It’s difficult to find out which hospitals in a given region have less-than-full accreditation. To check on a hospital’s accreditation status, one has to open each individual profile. The Joint Commission once had a mechanism to sort hospitals by accreditation status, but that is no longer available.
• After a hospital loses accreditation, its past Accreditation Quality Reports are eventually removed from the site, leaving only the facility’s name with no historical record.

_________

I spent some time looking around in the site, and indeed,when  you list the hospitals in an area, you can’t see a thing about their status: you have to pick through the whole list, opening them one by one.

So I called the Joint Commission and was referred to someone in communications, who would only re-state the way it is, saying the information is there (if you dig through it). I repeatedly said that we want it to be easier to find. It’ll be interesting to see whether they change it back.

Joint Commission, please hear this: healthcare citizens need clear, easy access to this pivotal information: “What are my options, for quality, convenience and price?”

We want to make informed choices – especially on the quality of the provider who’s going to cut our mother open and then care for her. Please help us make informed choices. Make the differences easier to see.

Thanks to AHCJ for doing this work and reporting it; thanks to Paul Levy’s blog at Beth Israel Deaconess for bringing this up.

________________________________________________

^{Related e-patient resources:}

• ^{Health News Review, a great place to learn how to think critically about published health information}
• ^{Trisha Torrey’s book You Bet Your Life: Ten Mistakes Every Patient Makes, which teaches patients to wise up about the business of healthcare.}

Their analysis of data from the Health Information National Trends Survey (HINTS) shows that the vast majority of Americans, “despite a decade’s worth of exposure to health information on the internet,” continue to trust physicians. Don’t you just love the word “exposure,” as if the internet is an infection let loose on the population?

Another favorite passage includes a citation of a 2008 study: Does the Internet displace health professionals? Yes? No? I’ll never know since it’s behind a pay wall, but I suspect it is being cited with the same “silly rabbit” tone I’m seeing associated with that awesome 1995 Clifford Stoll “hype alert” article making the rounds this week. Hesse, Moser, and Rutten seem to be reassuring NEJM readers: Don’t worry, you are still #1 in your patients’ hearts.

But hold the smartphone: Guess which source consistently comes out on top when people are asked where they actually turn first for cancer information? The internet!

The HINTS data dovetails with one of Pew Internet’s consistent findings:

The internet does not replace health professionals.

But the kinds of health information sought and found online are different from what people can glean from most traditional sources.

Six in ten e-patients access peer-generated health information such as blog posts, doctor/hospital ratings, podcasts, or customized health news updates.

The HINTS researchers conclude by connecting their findings on doctor-patient communication to national health IT investment. Sure, that’s a valid finding, but I think they are being too modest. HINTS and Pew Internet data show that the internet offers much more than doctor-patient communication. It is a just-in-time information device that people can tap into wherever they are, whenever they need it, connecting with whatever source they believe will help them at that moment. And that source is not always a doctor.

On Monday, DiabetesMine and the California HealthCare Foundation launched the 2010 DiabetesMine Design Challenge. Last year the contest garnered more than 150 entries and awarded a grand prize, a “most creative” prize, and a kids’ category prize. I can’t wait to see what people come up with this year — please help spread the word.

Today, Project HealthDesign announced the five winners of their two-year grant and mentorship program aimed at encouraging the use of observations of daily living (ODLs) into clinical practice.

Patty Brennan, Project HealthDesign’s national program director, wrote:

Our premise is that ODLs can help unlock information that is typically not part of the clinical experience – but that providers and patients absolutely need to be talking about. To help us test this with real people and real providers, we have selected five outstanding grantee teams for an intensive two-year demonstration projects to test whether and how information – such as the stress levels of caregivers of premature infants and medication or cooking routines of seniors at risk of cognitive decline – can be collected, interpreted and acted upon by patients and clinicians in real-world clinical settings.

I am honored to be on Project HealthDesign’s national advisory committee, although I should hasten to say that because of the Pew Research Center’s strict policies I did not vote for or against projects. I did, however, read proposals and participate in the debates about the merits of each one. The process was a highlight of 2009 for me. There is no shortage of excellent ideas, each of which strives to create a more participatory future for health care.

DiabetesMine and Project HealthDesign are just two examples of how design is taking center stage in health care initiatives.  What else are you seeing?  What else needs to be done?  How else can the field rise to the challenge that Jamie Heywood articulated at TEDMED:

“Wouldn’t it be great if the technology we used to take care of ourselves was as good as the tech we use to make money?”

Our first year was semi-focused – we published a GREAT batch of initial essays in the Journal of Participatory Medicine, but we haven’t done nearly the amount of work we’ll do in 2010. (Some of you have been banging down our doors trying to get things started; now’s the time.)

Here’s the purpose we drafted today:

To accelerate change in the culture of healthcare to a more participatory model, through leadership, advocacy, information and tools.

That’s why we’re here. Whether or not you’re a member yet, what outcomes do you want? What result do you want us to create in the world, that’s worth joining for?

As noted in my previous post, this is a busy day, and each of us gets only 5-7 minutes to speak, followed by Q&A. We submit our testimony in advance. Below is mine. Additional reference material:

• Panelist questions here
• Rob Koppel’s March 2009 JAMA article here
• RealPlayer webcast recording Koppel’s December lecture about the article here
• I was alarmed by what I learned in that webcast, and wrote about it here

Click for a PDF of the testimony I submitted.

The difference, of course, it that this isn’t about obscure books; in this case lives are at stake.

Wendy White of Siren Interactive supports Rare Disease Day. We ran her post about it last year; she’s back. Be inspired by this great cause – and be aware.

Imagine that your health is failing or that your child is very ill, but the doctor can’t figure out what’s wrong. This goes on for a number of years, despite multiple visits to specialists. Then when you do get a diagnosis, you learn that you may never meet anyone else who has this disease or has even heard of it since it affects only a few thousand people. Unfortunately, this describes the experience of many people with rare diseases.

That’s why it’s so important to increase awareness of rare diseases. February 28, 2010 has been designated as worldwide Rare Disease Day to call attention to the public health issues associated with rare disorders. A rare disease is one that affects fewer than 200,000 Americans. Yet, because there are more than 6,000 rare diseases, 1 in 10 people in this country are impacted.

In the U.S., Rare Disease Day is being sponsored by the National Organization for Rare Disorders (NORD). As experts in helping organizations communicate with small patient populations, Siren Interactive is partnering with NORD to promote Rare Disease Day.

Siren designed a website and developed a social media strategy that included Facebook and Twitter to provide access for the rare disease community to the many ways that NORD offers to participate in this movement.

Raise Your Hand
Lundbeck Inc., a pharmaceutical company dedicated to improving the lives of patients affected by complex central nervous system disorders and rare diseases, is supporting Rare Disease Day 2010 by launching the Raise Your Hand to Fight Rare Diseases campaign.

Individuals simply click the Raise Your Hand icon posted to http://rarediseaseday.us, as well as Lundbeck’s home page, and can also access a widget to spread the word through social networking sites. For everyone who clicks the icon during February, Lundbeck will make a donation to a general fund managed by NORD that is used to support rare disease research.

So raise your hand, tweet and share your story in support of Rare Disease Day.

To stay connected with this conversation and receive alerts on new postings, please subscribe via RSS, or sign up for our monthly newsletter, Adventures in eMarketing, to receive a roundup of the top rated blog posts, associated reading lists and relevant insights.

This post was contributed by Wendy White, Founder and President of Siren Interactive. You can connect with her on Twitter @sirenwendy.

Lots to cover between 9 and 3 including lunch!

HIT Policy Committee
Adoption/Certification Workgroup
February 25, 2010
9:00 a.m. – 3:00 p.m. (Eastern)
OMNI Shoreham Hotel
2500 Calvert Street, NW
Washington, DC 20008

Instructions and Questions for Panelists

Background
Testimony from this hearing will help the Adoption/Certification Workgroup formulate recommendations to the HIT Policy Committee and National Coordinator on patient-safety issues related to use of electronic health records – both risks and approaches to mitigating those risks. If you have any questions, please contact Kathy Kenyon at Kathy.Kenyon@hhs.gov

Format of Presentation:
The Workgroup respectfully requests that panelists limit their prepared remarks to 5-7 minutes. This will allow the Workgroup to ask questions of the panelists and allow every presenter time to present his or her remarks. We have found that this creates a conversation for a full understanding of the issue. You may submit as much detailed written testimony as you would like, and the Workgroup members will have reviewed this material in detail before the hearing. PowerPoints will not be needed.

Pre-Presentation Questions/Themes:
The questions below represent areas the Workgroup intends to explore at the hearing. Please feel free to use them in preparing your oral and written testimony; the Workgroup recognizes that certain questions may not apply to all presenters.

The Workgroup respectfully requests panelists to provide written testimony by February 19, 2010. Please submit the testimony to Kathy Kenyon and Judy Sparrow at Kathy.kenyon@hhs.gov and Judy.sparrow@hhs.gov

THEMES/QUESTIONS

9:15: Panel 1: Identifying the Issues

Ross Koppel, University of Pennsylvania (author of the JAMA paper described in the webcast); David Classen, CSC; Gil Kuperman, Columbia University; Alan Morris, Intermountain Healthcare

• What are patient-safety risks that may be introduced inadvertently through the use of electronic health records (EHRs) or other HIT products? Are there specific types of risks that are more common than others?
• What are the causes of those risks?
• What are ways to prevent and/or mitigate those risks?
• How would you weigh the benefits and risks of using EHRs in patient care?
• How might data on risks best be identified as greater HIT adoption occurs?What are the factors that might impact an organization from reporting adverse events or known concerns about HIT products?

10:45: Panel 2: Stakeholders

Dave deBronkart, ePatientDave; Justin Starren, Marshfield Clinic; Jeanie Scott, Veterans Health Administration; Susan Edgman-Levitin, National Patient Safety Foundation [invited]; Gay Johannes, Cerner; Carl Dvorak, Epic

• What experiences have you had with EHR-associated patient safety risks?
• How have you identified those risks?
• What steps have you taken to prevent harm or to mitigate the safety risks?
• What approaches would you recommend to prevent or mitigate harm associated with the use of EHRs?
• What are the benefits and concerns about making those risks and/or adverse events publicly known?

12:15: lunch

1:00: Panel 3: Possible Approaches

Jeff Shuren, FDA/medical devices; William Munier, AHRQ; James Walker, Geisinger; Edward Shortliffe, AMIA

General Question: What approaches would you recommend policy-makers and the health care industry consider to address safety issues? How might these approaches affect innovation, timing of getting products to market, costs, etc.?

If you are a government representative:

• Describe the current status of regulatory activities or other programs related to patient safety, including your legal authority.
• Describe considerations that may impact government efforts in the future.
• Describe approaches for reporting and tracking patient safety concerns and addressing these concerns.

If you are conducting research and evaluation of safety issues related to EHRs:

• Describe main options for activities by government and private entities to address safety concerns regarding EHR, including reporting.
• Describe advantages and disadvantages of different approaches.

Industry Perspective:

• Describe organizations or processes you rely upon to have confidence you are buying a safe EHR?
• What approaches to EHR safety would give users confidence?
• What do EHR vendors do with customer-reported safety issues? How are other customers notified of potential issues? What is the counterpart to product recalls and notifications to customers?
• What are the advantages and disadvantages of government regulation?
• What are the advantages and disadvantages of private, voluntary programs to certify safety?
• What role should safety reporting have? Who should receive such reports? What are the characteristics of an organization that receives EHR safety reports? How should the aggregate data be used? How should the findings and recommendations be disseminated?

=========

2:30 p.m. Summary Comments from the Workgroup
2:45 p.m. Public Comments
3:00 p.m. Adjourn

This column first appeared in Government Health IT on January 20, with the title “Plain Speaking on Health Data Access.”

For years a crisis has been brewing for many people who have become tangled up in a cyber-age web where healthcare records are being generated and maintained across an ever-broadening spectrum of healthcare delivery systems.

Two particular categories of patient are at the forefront of this crisis: those that have been diagnosed and told they have a terminal disease; and our country’s severely wounded military service members who are forced to transition from the Department of Defense to the Department of Veterans Affairs and out into the civilian healthcare system.

Both sets of patients face a similar, urgent and daunting task. They are literally fighting for their lives while being forced to get their hands on every shred and electron of their medical histories. By searching the Internet you can see that all across the country, patients and families are caught up in this crisis. By the time these patients are at this stage of treatment, every minute, hour and day counts.

It’s plain that our healthcare “system” needs to focus on these patients and respond quickly by providing a complete medical history that gives each of them a fighting chance to live.

I believe that there is much that can be done to remedy this crisis with the right leadership and initiative. First, the federal government should ensure that we have access to our personal health data held in federal agency databases via a single, secure, portal on the emerging Nationwide Health Information Network (NHIN). By enhancing the transparency of government-held clinical and health claims data, a federal health record (FHR) gateway would support already established Presidential and congressional initiatives in the area of patient-centered health.

Creating a FHR gateway pilot would be a relatively simple approach that would focus on addressing the needs of our most desperate patients. Although initially focused on data held by specific federal government agencies so as to reduce complexity, a pilot would rapidly yield prototypes and lessons-learned that could be leveraged in other agencies and jurisdictions.

Ending or averting this crisis of access to medical history for our most needy patients should be a national policy priority. With the right leadership and focus, projects like this could lead the way in how our nation responds to this critical challenge.

We often talk here about empowered patients’ struggles to get – or even create – the care they need. Usually we’re talking about it in a medical sense. But as far too many people know, sometimes there are other obstacles. Laurie Todd is, to me, an outstanding example of someone who wouldn’t take death for an answer – neither from doctors nor from their HMO. She says winning these battles is her calling – and she has made it her career.

My name is Laurie Todd. I am an e-patient, and I am the Insurance Warrior.

In March 2005, I was diagnosed with late-stage appendix cancer, rushed into surgery, and given months to live. I immediatley lost my business, my income, my savings. Finally, I was sent to the oncologist, who said, “There is no treatment for your disease. And, even if there were, they wouldn’t pay for it.”

That was a Friday. I spent the weekend at the computer. I pored over medical journals until late into the night. It didn’t take long to discover that there was a tried and proven treatment for my disease, involving another fourteen-hour surgery and heated intraperitoneal chemotherapry. This treatment could give me an 80% chance of no recurrence.

My HMO did not have this treatment available in their network. So, I wouldn’t be allowed to have it.

I found the world’s expert on appendiceal cancer — across the country in Washington, D.C. Then, I returned to Seattle to figure out how to make my insurer pay for it. I spent two months reading, studying, gathering proof. What I really needed was the finest lawyer money could buy. However, since I had no money, I had to turn myself into that lawyer.

Three months after receiving my twenty-three-page War Documents, my insurer called me, “We have decided to pay.” They paid it all. My expenses during 2005 were approximately $345,000. My share? Nine dollars.

I had won the treatment; now I had to undergo it. After my fourteen-hour abdominal surgery and heated intraperitoneal chemotherapy, I hit the jackpot of complications. I spent forty days in the hospital, wondering if I would ever get home. I returned to Seattle — in a wheelchair, too weak to brush my teeth — but free of cancer.

It wasn’t long before people started calling me, “We heard you had a great victory. My insurer won’t pay for my lifesaving treatment … can you help?”

As of today, I have won fifty-three insurance appeals, for lifesaving treatments costing between $100,000 and a half-million dollars. Many insurers, many conditions/diseases, all over the United States. All won in a week or less.

In 2007, with the backing of a major cancer research foundation, I published my first book, “Fight Your Health Insurer and Win: Secrets of the Insurance Warrior.” This book has sold thousands of copies, and has helped hundreds of patients to win their own insurance battles.

In May 2009, I published my second book, “The Sample Appeal: More Insurance Warrior Wisdom.”

I have addressed general audiences at public libraries and service clubs. I have spoken to groups of healthcare professionals, cancer patients and caregivers, social workers, and benefits administrators. In May 2009 I addressed an audience of two hundred doctors and patients at the Liver Symposium in Chicago.

Cancer came through my life like a tsunami, and swept everything away. I opened my heart to the experience, and found the way to survival. When others found me, I could not refuse to help them. And so, my previous life passed away, and a new profession found me. People look for that one thing that nobody else can do — their right livelihood. It took an advanced cancer, a healthcare system that thwarted me at every turn — an an open heart — for right livelihood to find me.

Cheers,

Laurie Todd
www.theinsurancewarrior.com

For these meetings, one needs to submit prepared remarks in advance, for the committee to digest in advance.  And from what I’ve learned so far about this, there’s a lot to chew on, and people of all stripes (that’s you) can probably provide valuable input. At very least you can express yourself.

[Update 1 pm ET Thursday: I haven't been able to convert the recording mentioned below (which is in RealPlayer format) to display it here, but if you have RealPlayer installed you can play it yourself at http://real.welch.jhu.edu/ramgen/DHSI/Dec182009.rm. The slides are often out of sync with the audio but they catch up. Skip the first 9 minutes; the talk starts around 9:15 and goes 30 minutes, followed by 30 minutes of Q&A. The meat of it is in Dr. Koppel's talk, but the Q&A has more juice.]

The meeting subject is Health IT Safety. This sounded like an odd topic – considering all the things that go wrong because data is NOT computerized, what are they talking about, re safety risks WITH the technology??

I know I’m in over my head, being “just a patient.” But the more I learned tonight, the more I thought maybe that’s a good thing.

Because tonight I learned there are truly massive problems with the workflow and flow of information in today’s systems.  Later Thursday I hope to post a link to a 30 minute webcast with 30 minutes of Q&A from December, documenting what some horrifying failures in today’s big EMR systems.  You’ll judge for yourself, but imagine…

• …if a system you had to use every day would often display unreliable information, while insisting you do things that make no sense.
• …that the maker of the system insists on a “hold harmless” clause, so when something goes wrong, it’s not their fault. Legally no consequence for failures.
• …that nobody involved in the malfunctions talks about them, and many people are not allowed to talk about them, much less collect a bug list.

Examples of software issues in these multi-million dollar systems, as documented in the webcast:

• The user interface (UI) may not highlight what needs the user’s attention. (Ever dealt with a web page where you can’t spot the info you need? That’s what these systems can be like.)
• Sometimes, values can’t be sorted in numerical order. The computer system cannot be programmed to do this, so workers have to hunt through a list to find the number they want. (I’m not making this up.) (Imagine a website where a list of states was unsorted and couldn’t be fixed.)
• Units of measure get intermingled: a patient’s weight that must be entered in kilograms on one screen might be displayed on another screen without the units showing, so sometimes it’s interpreted as pounds (because pounds are used elsewhere in the same system). Imagine the consequence on medication dosage.
• Workflows are sometimes set up to insist on certain actions (even if they’re wrong), so users have to create torturous workarounds. (Remember, “users” is the doctors and nurses who are trying to take care of your mother. Part of their attention is consumed by coping with a system that doesn’t work.)
• Attempts at quality control (for instance bar codes for prescriptions) can be thwarted by real-world circumstances that weren’t tested: babies who chew off their bar code bracelets, bar codes on prescription bottles that aren’t durable enough to withstand normal handling, etc. In this study, 4.2% of all bar code bracelets didn’t work! How’s that for a safety feature?

I’m not making this up; you’ll judge for yourself when the video is up.  Pitfalls we wouldn’t tolerate in the simplest word processing program are commonplace in million dollar medical systems. Ending up with erroneous data is not unusual.

And we want to transmit this data? Yikes.

For the purpose of this post:

• Imagine that the system running your hospital might be full of crap. (Yes, that word appears in the webcast: a major hospital executive famously rejected a major EMR system and replaced it with another, which he described as “the cream of the crap.”) (He said about the system they’re moving to.)
• Given this situation, what do we ask our government to do?

Our answers will go to the specific people who will recommend national policy on this. What advice can we give them on how certify a system so that it qualifies for Federal stimulus money?

You software system people out there: what would you do?  You don’t get to demand a different reality; we have to start where we’re at. What do we do?

You clinicians – the people who have to use the systems: what would you want the government to do?

_____________

Here’s one radical idea:

What if a system could only get certified (and thus get the stimulus money) if the people who use it say it basically works??

(Can a system be meaningful if the users say it doesn’t work?)

Guiding principle: ask the workers who are directly impacted if the system screws up.

_____________

Another idea: since we can’t wave a wand and fix everything instantly, prioritize collecting failure data so we  can figure out what needs fixing, and we can prove that a fix has worked. (Software tools to do this are common in high tech.)

Two guiding principles here:

1. Lives are at stake. I can imagine no valid excuse for interfering with this effort.
2. Let doctors and nurses do their jobs. If a system interferes with my nurse practitioner, to me that’s a problem. We must stop systems from getting in the way; good systems don’t.

I imagine this has to be combined with amnesty for errors. If people get punished for reporting a mistake, it won’t happen. (I heard the FAA has such a policy, and it’s helped greatly in reducing causes of crashes.)

_____________

A third idea, which would need to be thought out: Allow a second set of eyes to check for obvious mistakes. An obvious resource here is the patient or family or advocate. But given that the systems can be awkward for professionals to use, I’m not sure how to approach this.

I do know, though, that no stakeholder is more motivated. And as cancer widow and 73 cents artist Regina Holliday made abundantly clear in December, you might be surprised what a motivated “just a high school graduate” can spot that’s a useful contribution. (And free.)

_____________

What else can we say about achieving safe, reliable data? What policies should they recommend, to cope with the cream of the crap?  Comment please.

Some background “footnotey” details follow.

____________________________________________________

This workgroup’s position in the hierarchy:

• The Health IT Policy Committee is chaired by Dr. David Blumenthal, the National Coordinator for health IT.  The committee is tasked with
  • recommending a “policy framework for … a nationwide health information infrastructure, including standards for the exchange of patient medical information.” (That’s your medical data, your mother’s, etc. etc.)
  • “recommendations on standards, implementation specifications, and certifications criteria in eight specific areas.”  In other words, they get to say what’s acceptable and what’s not, when it comes to health IT.
• Inside that committee, this is a meeting of the Certification/Adoption Workgoup, which will make recommendations about “certified electronic health records that support meaningful use, including issues related to certification, health information extension centers and workforce training.”
  • Got that? That’s “How do we certify that a given health IT system is reliable, so it contains – and transmits – accurate data?”
  • They even get to recommend issues of workforce training. If you’ve ever implemented a new computer system in your workplace, you know how important that is.

This meeting’s agenda:

Adoption/Certification Workgroup Meeting
Omni Shoreham Hotel, 2500 Calvert Street, NW, Washington, DC
Thursday, February 25, 2010, 9 a.m. to 3:00 p.m./Eastern Time

9:00 a.m. Call to Order/Roll Call – Judy Sparrow, Office of the National Coordinator

9:05 a.m. Meeting Objectives and Outcomes: Health IT Safety
– Paul Egerman and Marc Probst, Co-Chairs

9:15 a.m. Identifying the Issues

• Ross Koppel, University of Pennsylvania
• David Classen, CSC
• Gil Kuperman, Columbia University
• Alan Morris, Intermountain Healthcare

10:45 a.m. Stakeholders

• Dave deBronkart, ePatientDave
• Justin Starren, Marshfield Clinic
• Jeanie Scott, Veterans Health Administration
• Susan Edgman-Levitin, National Patient Safety Foundation [invited]
• Gay Johannes, Cerner
• Carl Dvorak, Epic

12:15 p.m. LUNCH BREAK

1:00 p.m. Possible Approaches

• Jeff Shuren, FDA/medical devices
• William Munier, AHRQ
• James Walker, Geisinger
• Edward Shortliffe, AMIA

2:30 p.m. Summary Comments from the Workgroup
2:45 p.m. Public Comments
3:00 p.m. Adjourn

The organizing themes for the course include:

(1) Who created and disseminated health information, and how was that information communicated to the public?  How and why have particular audiences been targeted by gender, age, race, ethnicity, region, and class?

(2) How did a symbiotic, sometimes adversarial relationship emerge between two of the most successful industries of the twentieth-century—medicine and the media?  What have been the changing patterns of collaboration and conflict?  And what have been the consequences of this partnership for the public’s health?

(3)  How have organizations with competing agendas used the media to promote their economic, political, and social interests?

(4) How has the mass media shaped cultural representations of physicians, biomedical researchers, health, and disease, as well as health-related public debates and political controversies?  How have media portrayals shaped public expectation of medicine and perceptions of the medical profession?  And how has the media influenced perceptions of health and illness by the medical community?

Readings for this week:

*Pauline W. Chen, “Medicine in the Age of Twitter,” New York Times (June 11, 2009).

Carleen Hawn, “Take Two Aspirin and Tweet Me in the Morning: How Twitter. Facebook, And Other Social Media Are Reshaping Health Care,” Health Affairs 28 (2009): 361-368.

*Susannah Fox and Sydney Jones, “The Social Life of Health Information: Americans’ Pursuit of Health Takes Place within a Widening Network of both Online and Offline Sources,” Pew Internet & American Life Project (June 2009), pp.1-72.

*Sachin H. Jain, “Practicing Medicine in the Age of Facebook,” New England Journal of Medicine 361 (2009): 649-651.

Leslie Beard, Kumanan Wilson, Dante Morra, and Jennifer Keelan, “A Survey of Health-Related Activities on Second Life,” Journal of Medical Internet Research 11 (2009): e17.

Websites of Interest (review of these sites not required, but each may serve as a research reference)

http://www.patientslikeme.com/

http://e-patients.net/

http://www.hellohealth.com

http://secondlife.com

Suggestions welcome in the comments for what else these undergrads should read – and what I should tell them!

Thomas Goetz catalogs the recent advances (and setbacks) in medicine & personal health, but also maps out the possibilities for how things could get better. He does this so convincingly that you can’t believe it’s not already taking root: clear labeling on drugs & food, passive tracking of our exercise routines, open access to our health data.

There are enough lessons for self-improvement in the book that I found myself comparing it to What to Expect When You’re Expecting, but since Goetz focuses on the big picture (prevention, diagnosis, disease management) it is more like What to Expect When You’re Expecting a Long Life.

Unlike the pregnancy bible I read 10 years ago (and more than once threw across the room), Goetz doesn’t preach from a lofty whole-grain pulpit. He  doesn’t think we should ask people to do more, nor should we scold people for every mistake they have made, but rather we should give them tools to make better health choices.

For me, it sparked a renewed interest in tracking my own health. I’m not going all Quantified Self yet, but I am interested in a few key variables, like how far I run, my weight, and my cholesterol levels. And yep, I’m just writing things down, as Amy Tenderich recently wrote. That’s participatory medicine, too.

Readers of this blog are probably familiar with many of the companies and studies Goetz profiles in the book: the Framingham Heart Study, CureTogether, PatientsLikeMe, Nike+, 23andMe. I learned new things about each one and now have better talking points when I’m explaining Health 2.0 to newcomers. In fact, I got the feeling that this was a reason why Goetz wrote the book: for all those public-health nerds and personalized-medicine geeks who wish they could explain to people why it is just so awesome that we can calculate our risk for heart disease or cancer. You know how MDs are always asked for cocktail-party diagnoses? This book is for all the MPHs who stood nearby wishing that someone would ask them for on-the-spot health advice.

If I’ve sparked your interest in the book, check out the following:

Brian Ahier’s review: Data not drugs

Kent Bottles’s review: Check Lists & Decision Trees v. Spontaneity & Imagination

Short video introduction: The Argument for Better Health, in 3 Minutes & 53 Seconds

My kudos to them.

I prefer to turn the question around now and look at the benefits of publicness that we lose when we make something unnecessarily private. I’ve said that revealing my prostate here brought me great value: support, links to sources of information, incredibly candid and helpful previews from patients who’ve gone before, and the opportunity to spur others to check for the disease. Without revealing my cancer in public, I’d have received none of that benefit. I also argue in WWGD? that there’s value in the aggregation of our knowledge: if we all chronicled what we were doing 24 hours before the onset of my other condition, heart arrhythmia, would doctors find new patterns? If we all shared and could analyze our repair records for our Toyotas, would we surface dangerous flaws earlier? Not revealing such data may indeed someday be seen as antisocial.

The first time I met Gilles Frydman, I asked him about ACOR’s privacy policy. He shrugged and smiled, “Our policy is that you have no privacy.” Social sharing on the ACOR listserves is expected, if not required. That prepared me for meeting Ben & Jamie Heywood, whose ferocious belief in openness has found expression in the PatientsLikeMe platform.

Ben, Gilles, and I will be on a “Patients and Online Communities” panel together at Health 2.0 Paris (along with four stellar EU panelists – check the agenda). It’s a hugely broad topic and I’m already thinking about the issues I’d like to discuss (including openness, health data rights, and whether consumers really understand the choices they make). What else should we talk about?