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An angry veterinarian says “I don’t understand…” (Reprise five years later)

It’s five years since the ARRA/HITECH legislation was passed that pretty much mandates that American medicine has to computerize. Policies created since then have been enormously effective at moving adoption forward. We still need vast improvements of the user interface, but things are moving in the right direction.

Five years ago I myself was trying to figure out what to say about the garbage I’d discovered in my own medical record – actually the garbage was in my insurance billing history. That period on this blog was full of explosions. The uproar led my wife to post this on April 5, 2009. It’s worth revisiting.

From my wife:

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Erin Moore: “Your message did not fall on deaf ears.”

Erin Moore profile pictureLast week SPM member Erin Moore (see her previous posts) handled an opportunity in Washington really effectively, and she got heard. Here’s a cross-post of her news, with permission, from her blog 66 Roses.

Last week I traveled to Washington, DC for two meetings. One was on the important role that patients & caregivers plan in understanding medication adherence, and the other was on patients and caregivers being involved as disruptive innovators in healthcare; both topics very close to my heart. While I was reimbursed for my travel expenses (less alcohol), I was not compensated for my time. I struggle with this. Part of me gets angry because my time is valuable, to a lot of people, and I want these folks to see and appreciate that. The other part of me wants to be heard, no matter the compensation.

During one of the meetings, I participated as a panelist and shared on the role that I play on our healthcare team. I view myself as a partner, and I work with different tools that our doctor has recommended (medications, medical devices) and with tools that I’ve found or created to manage Drew’s health as best I can. I think that our message was well received, that by partnering in care, meeting patients where they are rather than where you want them to be, has meaning. And patients who are meaningfully engaged in their own care have a better chance at a good outcomes.

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“Imagine someone had been managing your money and you thought you weren’t qualified.” (Reprise five years later)

Five years ago last week, I posted this. A lot has changed since then. Next week I’ll be re-posting what happened next, back then. The subject is still just as valid, so do think about it. Here’s a “reprint”:

I want you to think about something for a few days.

Imagine that for all your life, and your parents’ lives, your money had been managed by other people who had extensive training and licensing. Imagine that all your records were in their possession, and you could occasionally see parts of them, but you just figured the pros had it under control.

Imagine that you knew you weren’t a financial planner but you wanted to take as much responsibility as you could – to participate. Imagine that some money managers (not all, but many) attacked people who wanted to make their own decisions, saying “Who’s the financial planner here?”

Then imagine that one day you were allowed to see the records, and you found out there were a whole lot of errors, and the people carefully guarding your data were not as on top of things as everyone thought.

I’ll be back.

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Digital Communication and m-Health in Developing Nations

Approximately 98 % of the world’s population are now owners of cellphones, including many adults in remote, hard to reach locations. This proliferation of mobile devices has the potential to improve our ability to diagnose and track disease; to tackle and disseminate timelier, more actionable public health information; and provide expanded access to ongoing medical education and training for health workers in developing nations.

This was the essential message of  a speech that I presented at the United Nations 58th Commission on the Status of Women,  at a session sponsored by the Global Alliance for Women’s Health and entitled: “How Digital Communication Impacts Health Care in Developing Nations,”

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Detecting Emotional Contagion in Massive Social Networks (PLOS One)

Correlation with friends' emotions

Graph showing the spread of feelings among Facebook friends: positive and negative messages each correlate strongly (left side), and positive-negative mismatches have weak correlation (right side). And all this because of reactions to rainfall!

This isn’t directly related to participatory medicine per se, but for students of the social web and “health is social” factors, this will be fascinating and important. (In my speaking work, it’s always useful to cite new research that sheds light on how social connections work and how the internet affects things.)


Many here are familiar with the work of Nicholas Christakis (@NAChristakis) and James Fowler (@James_H_Fowler), who’ve documented the substantial health effects that come from who you know. (We wrote about them several times in 2010.) This is such a strong effect that it alters our thinking on how to solve public health issues; the most astounding to me was that your odds of being a smoker depend more on the behavior of your third order connections than on your genetics or family. (Your own probability of being a smoker depends not just on whether your friends smoke, not just on whether their friends smoke, but on whether their friends’ friends smoke … that is a bigger influence than your own genetics.) Same for obesity.

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Surgeon: “Participatory Medicine encourages partnership between patient and provider”

OR_portrait_06-23-09__1873_-_Version_3I now ask all my patients, at the end of our visits, “Did I get it? Did I successfully answer your questions and address your fears?”

Dr. Marc Katz is a cardiac surgeon in Richmond Virginia. His op-ed, Participatory Medicine’ encourages partnership between patient and provider, appears in today’s Richmond Times Dispatch.

This is an important article on the participatory medicine movement. Dr. Katz highlights not only the players, including our own Society for Participatory Medicine, but also his practice of participatory medicine.

Katz’s piece continues:

Today, there is a movement afoot — one that is welcomed by me and many of my colleagues. It’s a change that I hope will become the norm when it comes to the physician-patient relationship. It’s all about partnerships between patient and provider.

Participatory medicine, as noted by the Society for Participatory Medicine (S4PM), 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.”

You can read Dr. Marc Katz’s article in full here.

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Guest post by Kate Lorig: Words Matter – Let’s Reconsider the Term “e-Patient”

Kate Lorig photoThis is a real treat – a guest post by SPM member and participatory pioneer Kate Lorig. Kate was a friend of our founder “Doc Tom” Ferguson, is cited twice in his e-patient white paper (see right sidebar), was the author of an important essay What will it take to embrace participatory medicine? One patient’s view in the first issue of our journal, and is listed on its advisory board.

Her bio (at bottom) doesn’t brag about it but in many circles she’s best known as the creator of CDSMP, the Chronic Disease Self-Management Program, a six week training that basically teaches patient engagement – teaches patients to be engaged in managing themselves.

Except now she wants us to maybe not talk about e-patients. See what you think.

My mother taught me that “Sticks and stones may break my bones but words will never hurt me.” She was wrong. Words can and do harm.  It is for this reason that “nice” people do not use racial or religious epithets.

This brings us to E-Patient. The origins of this phrase are murky. It may have originated in Tom Ferguson’s 1996 book, Health Online. Tom was a true pioneer in defining a new, central  role for patients and suggested the use of the Internet for health care. Ferguson defined e-patient as  a medical consumer who is “equipped, empowered and engaged.” (Note there is nothing in this definition about using the Internet.) Today we tend to use the term as someone who is electronically engaged with their health.

The above explains a little about the “e”.  Now let’s talk about the patient. The Oxford English Dictionary defines patient as “A person receiving … medical treatment.  The second OED definition is a person “… to whom something is done,” (i.e., a passive recipient).

Immediately there is a dilemma. One cannot be enabled, empowered and engaged while being passive.   However, the problem is much bigger. I, like most people with several chronic conditions, do not spend my life being a patient. Yes, I am a patient when I am in relation to my medical care, although my providers can attest that I am not passive. However, 99.9 percent of my time, I am not receiving direct care and I am not a patient. I am a person. Being a patient is only one small part of what I do. I am a daughter, professor, gardener, volunteer and friend. By the way, you can put E in front of any of these; in most parts of my life, I am electronically connected and empowered.

I knew Tom Ferguson and wrote for his journal Medical Self-Care. I considered him a friend and mentor.  Nevertheless, I wish he had never used the term ‘e-patient.’

Mine is not a lone voice.  Many years ago when we first started writing about self-management and designing chronic disease self-management interventions, the people we most wanted to influence made it very clear to us that they were not diabetics, arthritics, or patients. They told us very clearly that they were people with ____.   They did not want to be identified as their disease or as a patient (passive by definition). In on-line disease specific discussion groups, I have often seen people discuss their dislike of labeling as a patient or by their disease.  We’ve always believed that when you don’t know what to call someone, ask them.

The term ‘e-patient’ has run its course. It does not serve us well. The word patient should be reserved for when we are receiving health care directly, interacting with doctors, nurses, hospitals and clinics. As for the “e-“, let it rest in peace. Instead of labels, patients and providers alike should work toward enhanced communication and understanding. Being a patient is part of life. But it is not our total identity nor is it what we are when we seek advice from other like us, or look for health information on line.

Let’s stop promoting patient-hood as an identity. It is disempowering. I know Tom would agree that there is much more to life.

Kate Lorig, DrPH, is a genetic mutant, having been born with gaucher disease.  She is a cancer survivor and has her share of common chronic conditions. She has maintained a fairly intense relationship with the world of health care and its inhabitants throughout her life. In addition, Kate is the director of the Stanford Patient Education Research Center, professor of medicine in the Stanford School of Medicine and a William Ziff Fellow at the Center for Advancing Health.

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What’s the PATIENT value in health IT?

SPM patient badgeSince HIMSS14, there’s been a robust discussion on the SPM listserv about the “business of IT” in healthcare. There were a number of our number present in Orlando for the HIMSS conference, with some of them appearing on the platform.

The conversation on our listserv, which you can read if you’re a member (If you’re not a member, why not? Close that gap here.), included many of our members expressing skepticism that the current landscape of health IT, particularly EHR (Electronic Health Record) development and implementation, offered much in the way of data use by patients.

My take, from the patient-with-experience-in-IT-implementation POV:

In my direct experience of all sorts of tech/IT initiatives in the business world – as an end-user on the eval team, not as a front-end designer of the system – over a number of decades, I can say that the issues being wrestled in the healthcare industry regarding IT system design and adoption are very common to all business-system tech engineering.

Designing a process without input from ALL process-chain touch points is a pathway to frustration, wasted resources, and not much in the way of useable [anything]. The only winner is the vendor who builds the process/system, since getting paid is baked into their development contract. They’ve only got skin in the game if the buyer has very smart peeps on their contract team, which is not the case in the majority of IT projects that I’ve had direct involvement in.

One commenter’s mention of the “I don’t get paid to do that” pushback from the clinician/provider side is one outcome of what you get when you take a billing process and try to turn it into a manufacturing process – which is what EHR tech is, at root, trying to do.

So, taken as a whole, health IT is itself a litter of chasms, or of silos – pick your metaphor. Patient value, along with value to every other part of the health delivery system, will only come to fruition when we stop paying only for “sick” and start rewarding for “healthy” – I’m not talking about wellness programs, I’m talking about monetary rewards for clinicians who demonstrate health improvement (and not just readmission #s, either) in their patient panels, and revenue rewards in the form of tax breaks, or premium reductions, or both, for patients.

I define patient value in health IT as:

  • 100% access to my data
  • The ability to interact with it, and my clinical team, within the IT system without having to be in the room with them (the “office visit” thing)
  • Clear outcome metrics visible within the care plan that I can upload data to, reporting progress from my side
  • Some form of atta-boy in $$ form delivered for attaining outcome goals based on the data reported

What’s the patient value of health IT from your perspective? Share it in the comments.

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WikiProject Medicine: med students join in producing high quality Wikipedia articles. (You can, too.)

Significantly expanded, below the video, an hour after the first post.

Screen capture of The Atlantic headline

Headline from The Atlantic’s article last October

Peter Frishauf, member of the editorial board of our journal, has brought what is to me the most exciting news for participatory medicine since the OpenNotes project. Importantly, this news may have broader implications – because it addresses one of the core challenges of patient engagement: the quality and freshness of medical articles.

Last fall, UCSF School of Medicine professor Amin Azzam started a course for fourth year medical students to become Wikipedia editors and apply their skills to Wikipedia articles that were important to them and were poor quality. It got big-name media attention (NY Times, The Atlantic), and it should – because as we’ve often written, one of the core challenges e-patients face (and doctors face!) is finding up to date, reliable information.

This is not a trivial question – you can’t just rely on the peer review process, because it too has flaws, and good luck ever getting mistakes fixed. The biggest example is the ongoing vaccine controversy caused by a massive failure of peer review in the top-tier journal Lancet, but there are many others. Another shortfall is what our movement’s founder Doc Tom” Ferguson called “the lethal lag time” – the years of delay between a result being discovered and the time it reaches doctors.

Frishauf, who has often written about such shortcomings (see comment below), created this 14 minute interview. I have more I’ll say later, but what do you think? (If you can’t see the video, click here.)


You can find the links mentioned in the video below, at the end of this commentary,

Added an hour later (by Dave):

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“How collaborating with patients improves hospital care”: Guardian

Screen capture - The GuardianCare designers and fans of patient-centered care, listen up: a hat tip to Danish friend Malene Louise Djurhuus Laubinger for this, from The GuardianHow collaborating with patients improves hospital care.

We’ve often said on this blog that participatory medicine can extend well beyond the care encounter, to the design of care itself. Ultimately, it leads to questions like “Who gets to say what care is?”, or this, from a talk I gave in 2012:

“If the microscope’s happy but the patient’s not,
has care been achieved?”

 In short, there’s more to care than the biology and therapies. Those are important – but there’s more.

And, happily, this “more” is often cheap. This Guardian piece recounts several innovations that appear in no textbook, no med school course – they came from listening to patients about things that matter a lot to patients:

  • A change in privacy curtain color reduced hallucinations in ICU patients
  • Intubated patients were given an iPad app, to communicate, that had been developed for autistic patients
  • Several other example that arose from listening to patients found valuable.

Some people in audiences I’ve spoken to have asserted that patients seem needy and self-centered. Well, consider this, about how it felt to these patients, to be collaborating to improve care:

One of the legacies of the project has been participants’ personal satisfaction. Lusby [the patient who identified the ICU curtain issue] says it was her chance “to give something back to the hospital because without them I wouldn’t be here”.

I know there are initiatives or anecdotes in the US and other countries like this, but I don’t know if they’re cataloged anywhere. Please share in the comments.


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