Another guest post from Lisa Gualtieri, PhD, ScM, following her much-commented earlier post.

Lisa is Adjunct Clinical Professor in the Health Communication Program at Tufts University School of Medicine. Lisa teaches Online Consumer Health and Web Strategies for Health Communication. A social media user herself, Lisa (Twitter, LinkedIn) blogs on health and is Editor-in-Chief of eLearn Magazine, where she blogs on education.

I had an interesting juxtaposition of events. While waiting in Peets, a coffee shop in Lexington Center, I watched the friendly discussions between the baristas and customers. I then went to a doctor’s appointment, where a nurse stood typing at a laptop asking me a series of questions, including “Are you in pain?” and “Do you feel safe at home?” She didn’t look at me once as she read and typed.

Eye Contact with the Patient, Not the Computer, Is Paramount

Shouldn’t the intimacy of these questions mandate more eye contact than the less consequential discussions about today’s special roast and the weather? This is not jumping on the “customer” bandwagon, which has extended to some schools using “customer” instead of “student”. This is a matter of respect when asking personal questions and effectiveness at eliciting a meaningful response.

Ted Eytan, MD, MS, MPH, empathized with my experience. After his practice implemented an EHR, a patient told him, “You’re the only doctor who has looked me in the eye in the last 6 months of coming here.” Ted said, “It was like a dagger in my heart to hear that, and I am sure it would be for any other clinician.”

Computers in the Examining Room Should Not Be “Mysterious Intruders”

Danny Sands, MD, had great insights on what happens when a computer is introduced into the examining room. He said, “Interacting with a patient alone is a two-way conversation.  However, when there is a computer in the room, it is part of the conversation.  It both processes and provides information, and, because of that, it must be positioned in such a way that it can be a part of the conversation without being an imposition, just like if there was another person in the room. Ideally, with a laptop or desktop computer, the computer would be at the apex of an equilateral triangle with the human participants at other vertices.  With a tablet computer, the computer should be held by the user as they sit side-by-side.  In either case, the screen should be easily visible to both (but it should be possible to temporarily shield it from the patient when necessary). Too often, as in the situation you describe, the computer is a mysterious intruder in the room, and the goal of the clinician is to interact with the patient only as a means to the end of entering the appropriate information into the computer program.  This can be blamed on poor room layout, bad user habits, and badly-created user interfaces. Some would also blame the bizarre reimbursement system that rewards quality documentation above quality care.”

EHR Etiquette Should Include “Emotional Contact”

Pamela Katz Ressler, RN, BSN, HN-BC, similarly, believes medical professionals have prioritized information gathering over communication. She said, “While it is essential to collect information to arrive at a correct diagnosis, simply collecting information without addressing the human experience creates disconnection instead of connection; often leading to dissatisfaction by both the patient and provider.”

Joe Kvedar, MD, agrees with Pam about distinguishing between collecting necessary data and connecting with patients. When patients invest so much to get to and be in a doctor’s office, he believes, they deserve emotional contact including eye contact. Joe and I discussed telemedicine and how the “technical artifact of how cameras are placed on laptops” limits gaze awareness.

The different technologies for physician-patient communication all convey different types and amounts of information, Joe went on to say, and too much focus is on tools, rather than human communication. I remember when airports first used kiosks for check-in, and I answered questions on a screen about transporting packages that had been given to me by strangers. While I appreciated the speed of check-in, I felt less safe boarding a plane, hypothesizing that trained airline personnel might detect terrorists by tone of voice, facial expression, or body language. Just like, as Joe said, doctors obtain an enormous amount of information from looking at their patients.

Beverley Kane, MD, who teaches about EHR etiquette and worked with Danny on the first email guidelines for physicians, agrees. She noted the irony of how people tell their hairdressers more than they tell their doctors. Beauticians are often far more responsive and more sympathetic.

EHR’s Do Not Inherently Dehumanize; It Depends on How They Are Used

Following my experience with the nurse, the doctor walked in, shook my hand, and looked at me almost the entire time. He looked up one piece of information on the laptop in the corner – no triangle here – but it took under a minute.

My day ended at my acting class, where, coincidentally, we did exercises that focused on eye contact. In one, we tossed a ball at someone only after establishing eye contact; another was about the impact of physical distance and observation on intimacy. These exercises increased my own sensitivity to how powerful eye contact is, and how different stimuli, like touch and sight, can reinforce each other. Ultimately, better healthcare outcomes will come from verbal and non-verbal communication that is as attentive as in the coffee shop – or at the hairdresser’s.

Checklists in hospitals can dramatically reduce infections; checklists in the operating room can prevent all kinds of simple human errors even among brilliant conscientious people. There’s evidence for that.

Non-Twitter people, ignore the Twitter shorthand – this is just a quick way for me to capture the public discussion:

Me: RT @LeanBlog @flinchbaugh: A good read…What Sort of Checklist Should You Be Using? – Justin Fox – HBR http://ow.ly/1nhB2

@Lygeia: What would a checklist specifically for patients look like?

Me: Did you see Peter Pronovost in NYTimes last week on that? Do you know @TrishaTorrey’s “You Bet Your Life” book?

@Lygeia: “You Bet Your Life” by @TrishaTorrey looks closest–I just bought it–thanks!

@PNSchmidt (a Parkinson’s Disease specialist): My org and PDSociety UK have checklists for patients: http://bit.ly/9NCsoq http://bit.ly/cYGBoR

Robert Wood Johnson Foundation’s Pioneer Portfolio likes the discussion:
@PioneerRWJF: RT @ePatientDave: Great question! Let’s discuss RT @Lygeia: @ePatientDave What would a checklist specifically for patients look like?

A new voice (new to me), INQRI, pops up (“The Interdisciplinary Nursing Quality Research Initiative does research to understand how nurses contribute to and can improve the quality of patient care.”:
@INQRIProgram: patient checklist might include: have list of current meds, tell every1 to wash hands, ask questions

@Lygeia: Thanks @pnschmidt I especially like patient checklist at http://bit.ly/cYGBoR

@Lygeia: A streamlined, smartphone-based patient checklist would be cool INQRIProgram @pioneerrwjf, @ePatientDave

@INQRIProgram: you may be interested in some work we’ve done involving patients’ contributions to quality. http://bit.ly/92Ktgi

What do you think?

My original testimony urged a policy of letting patients see their records essentially on demand, not within 30-60 days as currently allowed by HIPAA. To encourage that, I also recommend that we mandate amnesty for errors that are found in the record. I believe no other path can lead rapidly to the goal I think we should all share: to produce better care for patients in hospitals today.

Tonight’s follow-on:
__________

Paul (and all),

Above all, I urge that we be pragmatic. We have a chance to make rules that will, or may not, make a difference in reality. In that spirit:

• Reinforcing today’s other mails, I think it’s vital to underscore what Dr. Koppel’s webcast [RealPlayer video] illustrated: all the potential hazards you listed, and especially the UI and arbitrary hard-coded workflow rules, can get in the way of data quality.
  • To me it was sufficiently scary to realize that if a system was programmed to require 40mg of something, it cannot cope with two 20mg tablets.
  • To patients in hospitals for the next several years, it does no good to rant about this and demand change. As my mentor said, what works is to manage it thoughtfully.
• Regarding implementation & training deficiencies, I emphasize again that regardless of cause, what matters to patients is the gap: being aware of it and doing everything we can to deal with it. Ranting won’t solve it.
• Regarding 5, “patients can find errors” – I want to be careful not to sound like patients are proofreaders for physicians. It might be clearer as “patients can often spot errors” or some such.
  • As I said earlier, we cannot absolutely prevent errors, but we can certainly minimize their impact.
  • Thanks for noting my wish “Let our foremost commitment be: To do healthcare better. Let us work together.”
• I don’t think I see anything in this draft about amnesty for discovered errors. (I see whistleblower but not amnesty.) Without this I don’t think we have a prayer of the industry accepting this, do we?
  • In open item #6 I do see “relationship between incident reporting and liability” but I don’t think that’s an open issue – I think it’s open and shut. As I said on my cover page, “let us do what encourages improvement.” Without amnesty, data transparency will be understandably feared by hospital boards and staff.

Regarding the open issue of extending whistleblower protection to IT safety issues, I cannot imagine an argument against this. Lives are at stake. Who will stand against any policy that will improve our error rate? I know some will, but I think it’s time for both types of “victims” to stand up – and I mean both the patients and the physicians who want better tools. Because as I learn about healthcare, increasingly I find physicians who are frustrated by things that hamper getting their jobs done.

Finally, this all seems especially current with recent news on the patient safety front:

• Paul Levy’s blog yesterday noted that last week the Lucian Leape Institute at the National Patient Safety Foundation released a report saying “medical schools and teaching hospitals have not trained physicians to follow safe practices, analyze bad outcomes, and work collaboratively in teams to redesign care processes to make them safer.” How scary is that?
• Macarthur Fellowship recipient Dr. Peter Pronovost, medical director of Quality & Safety at Johns Hopkins, was in the Times last week http://www.nytimes.com/2010/03/09/science/09conv.html, talking about how arrogance and ego get in the way of adopting methods that have worked in other industries. That’s a huge red flag for health IT.
  • Pronovost is the author of the checklist approach that has massively reduced central line infections. As someone who’s had 28 days of central line insertions, I’m grateful. Yet most hospital still resist this simple, no-cost improvement.
  • Business Week noted that reasons for this failure include “Many physicians do not like being monitored by nurses or otherwise being forced to follow a checklist” and “A wish to avoid standardized tasks and bureaucracy.”

Ironically, this all leads me to think that healthcare is too important to be left in the unconstrained hands of the healthcare industry.

For our own sake, we need to provide guardrails. And the least expensive, most motivated force we can introduce is the patient/family’s eyes, double-checking what’s in the record.
Today. We don’t need to wait years.

“The fundamental problem with the quality of American medicine,” Pronovost said, “is that we’ve failed to view delivery of health care as a science.” Last week in the quality improvement retreat I attended at Beth Israel Deaconess, a resident nailed it: “Boy, if we’re neglecting useful knowledge from other professions, that’s unscientific.”

Thank you again for the opportunity to participate. We can do great things.

Guest post from Lisa Gualtieri, PhD, ScM, Adjunct Clinical Professor in the Health Communication Program at Tufts University School of Medicine. Lisa teaches Online Consumer Health and Web Strategies for Health Communication. A social media user herself, Lisa (Twitter, LinkedIn) blogs on health and is Editor-in-Chief of eLearn Magazine, where she blogs on education.

“On the Internet, nobody knows you’re a dog” was the caption of the famous cartoon by Peter Steiner in the July 5, 1993 issue of The New Yorker. The same is true of patient stories on health Web sites: nobody knows who really wrote them. In the case of Lifestyle Lift, the company agreed to pay a $300,000 settlement last year to New York State because their patient stories were employee-generated.

Patient stories can provide information, support, reassurance, and practical advice, which is why 41% of e-patients read the commentaries and experiences of others online. The three primary types of patient stories are the unedited user-generated stories in online health communities and patient blogs; professionally edited or “as told to” support stories; and promotional stories.

User-generated stories in Weight Watchers’ Message Boards provide context to questions and responses and add a sense of reality and dimension to the person posting, making authors, and therefore the content, seem trustworthy. This is not isolated to weight loss sites but is true of cancer support sites like ACOR.org and countless other online health communities and patient blogs. Similarly, in the more carefully crafted and edited support stories, such as Livestrong.org’s Survivorship Stories and Weight Watchers’ Success Stories, the details in each story make the person the story is about seem trustworthy. Any inaccuracies in the user-generated or edited stories may not be intentional and do not necessarily detract from the helpful or supportive nature of the story.

Promotional stories are not always easily distinguishable from other types of stories on health Web sites. While Weight Watchers’ Success Stories focus on strategies, RediscoverYourGo uses stories to promote replacement surgery. The stories are about the debilitating pain and the process of finding a doctor, undergoing surgery, and engaging in an active post-recovery lifestyle. According to the developer, they are from “100% real patients.”

But not all stories are from 100% real patients. Lifestyle Lift’s employees fabricated testimonials; actual patients’ comments are now on their Web site, they claim. The Web site features before and after pictures, and, not surprisingly, the after pictures have better lighting and composition and the people are smiling, wearing flattering make up, have changed their hairstyles and clothing, and even put on jewelry. Well, no law against that.

A hotly debated solution to discerning the credibility and reliability of health Web site content is seals. HONCode and U.R.A.C. are the seals that are best known for health Web sites, but many sites don’t have them, most people don’t know to look for them, and they don’t have widespread recognition. While it was not a surprise that neither of those seals were on Lifestyle Lift, it was startling to find their own seal, “The Lifestyle Lift Code of Internet Conduct and Assurance”. It pledges that “comments and photographs are from actual clients” and that they are “proud to take a leadership role in establishing new standards of Internet conduct and communications”. Was this seal created in response to the settlement? It was larger and more prominently displayed than the HONCode and U.R.A.C. seals usually are.

No matter which side of the seal debate you are on, seals do not authenticate individual patient stories. Unless you know the author of a story, you never know for sure if it is true. As Trisha Torrey points out, patients want to believe stories because they are desperate for information. Ultimately, most stories are from real people sharing authentic experiences, and the best way to weed out the others is to use common sense, be skeptical, check with a trusted medical professional, and remember that there are Lifestyle Lifts that haven’t been caught.

That’s just plain wrong. You shouldn’t get away with pretending to be patient-centered, any more than you should get away with pretending to be in love. So let’s get specific.

My view is that shifting to patient-centered care entails cultural change, which is difficult. Getting there requires a multi-faceted approach. Part of this involves spreading the meme, but this must be followed by education of all stakeholders in the healthcare system. One way to accomplish this is by providing concrete examples (“you know your practice is participatory if…”). Then we’ll be able to measure practices against this list of attributes.

Let’s crowd-source it. How do you separate the participatory from  “empty words” people? Here is my starting list of the most important attributes.

• Do you use an electronic medical record?
• Can patients can see their records online?
• When the EMR is being used in the office, is the screen is oriented so patients can see the record while the clinician is using it?
• Are there internet-connected computers and/or free wireless access available for patients/families?
• Do you have a patient/family advisory board?
  • Do you listen to them?
• Do you provide online patient services: education, tools, prescription requests, appointment requests, etc.?
• (Hospitals) Do inpatients have free, reliable and modern entertainment systems?
• Can patients/families contribute to the medical record?
• Are patients encouraged to seek health information on the web, offered advice, and given helpful answers to questions about what they find?
• Are intake forms online, prefilled when possible? (Not handwritten on clipboards)
• Do providers appreciate that most care takes place outside the office/hospital? (See Doc Tom Ferguson’s famous “steal these slides“)
• Are providers comfortable saying “I don’t know—let’s find out together”?
• Do providers practice shared decision making with patients and caregivers?
• Are patients encouraged to interact with their providers using secure messaging and other tools besides the telephone?
• Are patients always informed about test results?
• Does every encounter end with the provider asking if there are other questions or concerns?

What do you think? What issues would make you say “BS – you’re not participatory”? Comments please.

(Also: join the Society for Participatory Medicine to support the movement; participate in meetings of the Person Centered Health Community.)

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.

Patti 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