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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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“Health cometh not from healthcare”

We often say here that clinicians should welcome activated patients. Hand in glove with that, we must also say: Yo, patients: get activated! Know what works, and act on it!

Huzzah to Swedish SPM member and Parkinson’s patient Sara Riggare for this, on Facebook, which she got from SPM member Mighty Casey. (Notice a pattern?) It’s by John Mandrola MD, “a cardiac electrophysiologist practicing in Louisville KY. I am also a husband to a palliative care doctor, a father, a bike racer, and a regular columnist at | Medscape.”

A snip from the blog post:

Nary a day goes by that I don’t see an example of how good-intentioned active management of a patient causes problems. (BTW: My son, a grammar prescriptivist, says I shouldn’t use that word, nary.) Emergency rooms overflow with elderly patients who have fallen because of BP goals. Last week, I saw a patient admitted (for confusion) with dangerously low sodium levels because of high BP treatment. It’s the same story with aggressive blood sugar control, statins in the elderly, NSAIDs, and we have already discussed the limits of screening for disease. The good-intentioned-but-harmful-treatment list is a long one.

The success of managing chronic disease does not turn on doctors or nurses. It turns on the patient and his or her choices. One of the wisest doctors in my hospital once gave me unforgettable advice: he said doctors don’t control outcomes.

Note: the above words come from a post that says that this shows why the PCMH concept (patient centered medical home) can’t work, because it gives patients more frequent management.  I don’t know enough about the details of PCMH regulations; in my limited knowledge, the GOAL of PCMH is to give patients a “home” as in Cheers, “where everybody knows your name,” as opposed to a stream of providers you’ve never seen before.  My comments here are limited to what I said above, not about the PCMH concept.

My impression (half-informed at best) is that if patients are suffering those consequences as a result of doctors’ instructions, then the doctors were getting it wrong. THAT would be the problem – along with, I’d bet, insufficient instruction to the family on what to watch out for. But as I say, I’m just pointing to the paragraphs above. Delivering lots of medications and instructions is not a sure path to health.


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Rare Diseases: Powered by Patients

Rare Disease DayA guest post by Wendy White of Siren Interactive in honor of Rare Disease Day:

Can empowered patients drive change in healthcare? Take a look at the progress that has been made in the rare disease community over the last 30 years—much of it spearheaded by patients and caregivers–and I think you’ll agree that the answer is definitely, “Yes!”

In the decade before the Orphan Drug Act was approved in 1983, only 10 new products for rare diseases had been developed by the pharmaceutical industry. Since then, there have been more than 400 drugs and biological products developed for rare diseases.

But there is still much that remains to be done, especially in the area of diagnosis, which is a challenging task for physicians who seldom see rare diseases in their practice. In the first study, conducted by the National Commission on Orphan Diseases in 1989, more than 1/3 of patients reported that it took 5 years to receive an accurate diagnosis after the onset of symptoms. Over twenty years later, the Shire Rare Disease Impact Report found it took an average of 7.6 years to receive an accurate diagnosis in the US—with 2-3 misdiagnoses along the way resulting in inappropriate or delayed treatment.

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JAMA, patient centered medical homes, and the ongoing cost/quality conundrum

Today – February 26, 2014 – the Journal of the American Medical Association (JAMA) published the results of a pilot study (note: click the link, and then click the JAMA Reader link button on the right side of the page for the full text) of a volunteer group of Pennsylvania primary care practices. The pilot was designed by a coalition of payers, clinicians, and healthcare delivery systems in the southeastern region of Pennsylvania, and its purpose was to measure the impact, if any, of the patient centered medical home (PCMH) model on outcome/quality improvement and cost containment.

I’ll cut to the chase: the first paragraph of the conclusion states

A multi-payer medical home pilot [...] was associated with limited improvements in quality and was not associated with reductions in utilization of hospital, emergency department, or ambulatory care services or total costs over three years. These findings suggest that medical home interventions may need further refinement.

Further along in the conclusion section, the article refers to the patient-centered medical home as “professional associations, payers, policy makers, and other stakeholders, [in a] a team-based model of primary care practice intended to improve the quality, efficiency, and patient experience of care.” The only trouble with this definition of PCMH is that the patient is not really a part of the team – patients are once again assigned acted-upon rather than actor-in status in the healthcare transaction.

In a highly-readable post on his blog, Dr. John Mandrola boils his observation of the JAMA report down to “health cometh not from healthcare.”

Until the leaders in clinical practice – JAMA and all others in the position to ignite and guide the conversation about medical care, its purpose, and its future – fully recognize the need for a participatory model that starts and ends with the patient, we’ll be reading study reports like the one in today’s JAMA.

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Emory study: “PHR resulted in significantly improved quality of care and use of services”

Long-time readers will recall a hallway conversation I had at a conference in 2011 with Silke von Esenwein PhD of Emory University’s Center for Behavioral Health Policy Studies, who was presenting a poster with preliminary results of a study in process. The post was titled Safety net populations do benefit from online PHRs, and included the poster PDF and video of that conversation.

As the post noted, this was a significantly challenging population, with features I’ve often seen cited as reasons “patients can’t be trusted as capable partners”: these patients were poor (at a safety net provider), had a mental health problem, and had a chronic comorbidity. In this population an especially important part of “patient engagement” is coming in to use the services available to them.

The final paper was published recently in Psychiatry Online, and showed the opposite of that expectation: even with all those challenges, patients who were offered access to a PHR became significantly more engaged than those given “usual care.” Here’s a bullet-ized reprint of the conclusions:

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Crowdsourcing Curriculum on Consumer Health Informatics

What do you think should be included in a course in Consumer Health Informatics (CHI)  in a graduate medical informatics program?

I know a graduate curriculum begging for input from the most engaged and empowered consumers, patient advocates, and technology and health professionals – passionate about participatory medicine.

As faculty Oregon Health Science University, Department of Medical Informatics & Clinical Epidemiology, I’ve been asked to teach the CHI course. The class was developed by Holly Jimison, now at Northeastern University. Offered online this spring to graduate students in the Schools of Medicine and Nursing, it will be taken primarily by students getting a masters or doctorate in medical informatics. Students access lectures and other materials online through Sakai, participate in online forums and submit papers and presentations over a 12 week period.

Consumer informatics changes rapidly, so it’s challenging to stay up-to-date (like computers, it can get stale as soon as it walks out the door).  I’ve been editing course content and updating lectures, but all during this process I thought == how can I get the voice of consumers and advocates in the curriculum?  Answer: ask them!

What would you include in Consumer Health Informatics graduate curriculum?

Here’s a description of the class, and list of topics.  Feel free to comment about key areas of interest and less important topics, great content that you’re aware of – slides, videos, TedX talks, whatever. Of course if you really have something to say, contact me directly at – guest speakers welcome!

It would be great to start a discussion == I’ll make sure this  DISCUSSION is part of the students’ exercise! :-)

Description: This course focuses on the intersection between consumers, information technologies and health care. CHIT explores the design, use and impact of emerging technologies that aim to engage consumers to participate in their health and health care. We review trends, opportunities and challenges in consumer-facing health IT, taking the perspective of various stakeholders in particular consumers, patients & caregivers.

Draft Topics:

  1. Overview of Consumer Health Informatics
  2. Empowered consumers & ePatients (Tom Ferguson & SPM)
  3. Trends in consumer technology and health IT
  4. Quality of Health Information, information search
  5. Barriers to access; literacy & eLiteracy and learning styles
  6. Chronic conditions; disability
  7. User Design; Vocabulary; Pubic Reporting; Data visualization
  8. Personal health information, privacy & security
  9. Personal health records & portals, eHealth tools
  10. Health Information Exchange
  11. Patient-Clinician Communication; OpenNotes & Blue Button
  12. Ethics; Workflows; Patient Generated Data
  13. Caregivers; Peer to Peer Support
  14. mobile Health; Quantified self
  15. Research and systematic reviews; Consumer Meaningful Use
  16. Professionalism; Patient satisfaction


Hey Teacher, what’s in your wallet?

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Twitter Empowers Patients to Seek and to Speak Out

The ability to write something meaningful in140 characters, including a shortened URL, is the basis of Twitter. Over 500 million tweets go out every day to individuals who enjoy the simplicity, functional design, and speed of delivery that twitter offers, along with the ability to connect with others, collaborate and share ideas.  To say that Twitter is viral is to understate the facts.

Twitter launched in March, 2006,has become the go to place . By the fall of 2013, there were over a billion registered twitter users who generate more than 500 million tweets daily. Since its inception there have been over 50,000,000 healthcare tweets; over 5,000 comments, and there are more than 1,000 common healthcare hastags.

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