Health Information Exchange: We’re not there yet

This post was originally a comment by SPM member Jeffrey Harris on our C-ME post from April 3, 2014. Jeffrey has a long history as a clinician, a health IT strategist, and as a patient. We thought his commentary deserved its own post.

Jeffrey Harris photoI had the opportunity to moderate a PCPCC e-Health Public Meeting recently. We interviewed Dr. David Kendrick from the Oklahoma My Health Network. I believe they are a good example of the top 10% of HIE implementations for quality and value added to most stakeholders.
The architecture makes sense as the HIE brings services that eliminate administrative costs among providers, policy experts, payers and even patients.

They are using HealthVault as a PHR which, as you know, allows patients to create their own information-sharing profiles as well as connect to lab hubs, pharmacy hubs etc.

Your comment on a regulated banking model is something I would support. Here is the reason: As a healthcare executive with clinical program skills and HIT innovation patents I would be short sighted unless I add in my 47 years as a person with diabetes and associated co-morbidity.

We were promised increased safety, reduced cost, etc. due to implementation of health information exchanges (HIEs). Instead, our providers (including integrated delivery networks) are taking incentive payments for technology and using data for performance payments, yet not electing to share data with patients through a Single Sign On technology. The HIE in Oklahoma would be a natural architecture as it could push CCDs to HealthVault where patients could then access their global history.

We forget that 5% of the US population accounts for 50% of healthcare expenditures. These are folks like myself, with multiple sub-specialists who belong to different networks of care. My experience has not changed, with the exception of postal costs.

To assemble my documentation for a new physician (in this case a neurosurgeon) I had to access three portals, drive to one imaging service and then cut and paste the sentinel data that patients often forget to report into HealthVault. Then, I extracted data again through cut and paste methodology to deposit as a personal e-mail note in my secure ‘MyHEALTH’ Record at Duke since they will not allow patients to upload information. Yes, patient data entry is extremely important and easily controlled with regard to how it is used (for you lawyer types).

Unless we can get competitive business units (the root of health care fragmentation) to allow their information to flow, we will not see the returns we have been promised.

Here is an index case: I had neurosurgery on my c-spine. My family has a history of malignant hyperthermia. That history is only noted deep within a paper record somewhere in California. Here’s the problem:

  • How many patients remember stuff like this?
  • What if I received Halothane - 50/50 chance of survival?

So, I cut and paste from Healthvault.

The variable that we completely forgot when re-engineering our system is the fact that our society is based on individual rights and will. While this gives rise to incredible innovation it does not guarantee that humans will exchange information without receiving some return on the investment. Even when someone’s life is in the balance.

Yes , it is that dramatic when one looks at one patient at a time.

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It’s time to C-ME (see me): Consumer Mediated Exchange

By Mark Branning and Brad Tritle

Mark Branning

Mark Branning is Principal at mdb Healthcare IT Solutions, Adjunct Professor at National University, a member of the HIMSS  Connected Patient Committee and co-chair of the Connected Patient Community.  Mr. Branning has spent 33 years in the healthcare information systems industry and is a consultant specializing in patient engagement, health information exchange (HIE), interoperability, and product positioning.

Brad Tritle

Brad Tritle is Global Product Owner for Chronic Disease Management at vitaphone health solutions, co-founder of eHealth Nexus, former CEO of eHealth Trust Arizona, former executive director of Arizona Health-e Connection, and has served as a consultant to ONC on patient engagement for health information exchange.  He is a member of the HIMSS Connected Patient Committee, co-chair of the Connected Patient Community, and chair of the HIMSS Social Media Task Force.

This is a cross-post of a  HIMSS blog post and it is posted here with permission. 

Though the term Consumer Mediated Exchange, which we suggest shortening to “C-ME” (see me), has only recently come into the vernacular, due to its official standing as one of ONC’s three approved forms of Health Information Exchange (HIE), but in a non-electronic way has been around for quite some time (From the Office of The National Coordinator: The Strategy for Advancing the Exchange of Health Information).  In fact, one of the authors recalls a conversation between two university students nearly 30 years ago – one a veterinary student and the other pre-med – in which the vet student made the case that a vet must be a better diagnostician than a medical doctor, as the lower animals have no way to personally share a medical history or clearly communicate symptoms!

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SPM loves Flip The Clinic – we’re an “ally”

Flip The Clinic logoThe Society for Participatory Medicine enthusiastically supports this new, transformational initiative from the Robert Wood Johnson Foundation: Flip the Clinic. (Don’t you love the logo? Turning the clinic on its ear?)

It’s utterly engaging and empowering to patients, because it puts information in the hands of the patient and family – outside of the clinic visit, where we can study it at our own pace. Plus, it radically re-optimizes the “face time” of the visit, by offloading (or “pre-loading?”) an important part of the visit: knowledge transfer from clinician to patient. The clinician prescribes information for us to learn before the visit, based on the topic of the visit – so we spend our face time asking questions, instead of wishing after the visit that we had more time.

At the bottom of the FlipTheClinic home page is a list of “ally” organizations. We’re one:

Flip the clinic allies

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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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