Patient Engagement & Health IT – Disillusionment Sets In Poll Shows

This week, the 2015 HIMSS Patient Engagement Summit is taking place in sunny, warm Orlando. According to HIMMS, conference attendees will learn how “leading healthcare organizations” are successfully using health IT and other strategies to engage patients in their care.

Patient What I suspect attendees will not hear much about at the Summit (particularly from speakers and exhibitors – one in the same?) is the growing “disillusionment” with the ability of patient portals, EHRs/PHRs and smart apps to actually engage patients at all. One only need look at the dismal adoption rates of these technologies (in the very low double digits if that) within most provider organizations, Kaiser, Group Health and Geisinger being notable exceptions.

What disillusionment you may ask?

Recently I conducted my own informal poll on LinkedIn’s HIMSS Group by ask the following question:

If a patient chose NOT to use your patient portal, PHR or smart health apps do you consider them to be “unengaged” in their own healthcare?

The question was prompted by all the “over the top claims” by HIMSS (See their Patient Engagement Framework) and EHR and Health IT bloggers that patient portals, EHRs and smart apps are what drive patient engagement.  Come on now.

If that were true, that would mean that prior to the World Wide Web in the early 1990’s it was impossible for people to be engaged in their own healthcare.  That is simply not true!

Who doesn’t recall Healthwise’s big old health handbook.  It must have weighed 5lbs! Or who doesn’t remember “Ask A Nurse” – that ubiquitous 1-800 number you could call at 3:00 AM a health question? And of course there was always the doctor, family member or friend you could discuss your health concern with. To this day, more health conversations among seniors probably occur in McDonalds over morning coffee than on some EMR or health app.

But I digress…

So what were the results of my informal poll?

Take a look for yourself. Below are snippets from some of the 70+ responses (and counting) I received from members of the HIMSS Group which consists of developers, venture capitalists, informatics, vendors and clinicians.

What surprised me the most was how few “good things” people had to say about health IT in general…not just with regards to patient engagement.

• I am in healthcare IT and I still have not used my EPIC portal for scheduling an appt, view results, etc. because it is has been too much trouble to access.

• Are they “unengaged” if they do not use these tools? Absolutely not. [ . . .] I actually consider patients who use the portal, PHR or apps and are NOT having direct contact face-to-face or by telehealth as being “unengaged”. Patient engagement is a very personal and individual decisions made by the patient and can change drastically at any given time.

• It seems we too often try to use technology to replace human interaction. Patient engagement requires human interaction and collaborative work between the provider and patient.

• Until the portal becomes a) easy to use and relevant, b) doesn’t have 20 pages of legalese and c) can converse with you via email, txt, Instant Messages or phone; there will always be a substantial portion of the population that won’t use them.

• Ok, [patient portals]not normally a big deal until you read the terms of service which, paraphrasing the legalese, said “If we are breached, it is your fault. We are not responsible for losses you might incur. If it is determined that the entire system was compromised through your account you will be responsible for our costs to remedy the situation”.

• Match […]the technology to the message. I am aware of HIPAA secure phone mail systems that get 83% of patients using the system to listen to messages left for them by a clinician within 24 hours. We are all used to voice mail and using the phone.

• Engagement should be defined by the level of interaction with a provider, and the resulting outcomes. So, no, I think assessing level of engagement by use of the technology is pretty limited.

• If you want to know why patients and physicians do not use portals, it is because they are designed by EHR companies that design them as poorly as they design EHRs. Combine that with Byzantine security procedures, and you get a somewhat useless system.

• The assumption that a percent of users accessing data on a portal = patient engagement is where we fail! A percentage of people will access a portal for various reasons, and they will also NOT access a portal for various reasons. The real question should be…. what can we do to make the info easier to access and easier to understand.

• Point me to a portal that you believe is patient friendly, put on your flak jacket and give me 30 minutes to make you understand that the portal smells worse than pig effluent.

• Why would I be forced to go through all of the userID creation (I have somewhere around 250 of them in my Google profile) etc. just to give doctors access? Why can’t I tell the people at the radiology site that Drs A, D, V & Z can have access? I am extremely engaged in my health as a nearly 30 yr Type 1 Diabetic. But what you just described sounds like more PITA administration that I have ZERO interest in.

• You cannot force adoption, it comes to good products and causes bad ones to fail.

• I am committed to health (as opposed to healthcare) and I take an active approach to wellness. [ . . . ] Since my hospital-employed PCP implemented EPIC, my relationship with that office and my doctor has significantly degraded. The implementation of EHR and its patient portal caused me to disengage, not engage.

• Meaningful Use is the worst government policy since the Vietnam Conflict. Over 75% of doctors have stated that MU is a disaster and patients are waking up to this fact.

• EPIC and others have developed their EHR to generate revenue for the healthcare providers and they are forced to create patient portals due to regulations.

• Whatever use case you can think of, the patient MUST gain value in issuing a portal (I hate this 15 yr out of date term…) or you’re causing them pain and suffering just to cut administrative costs for the provider.

• We have to address “what is in it for me?” [when I comes to patient use].  The point is that barely nobody is engaged towards tools

• Give me a bad patient outcome and an EMR primarily designed to bill, that allows cut and paste, and populates differential diagnoses without requiring the provider to rule each out, and I will show you a lost med mal case.

• We are looking to technology to fix a human problem… taking their health for granted.

• Providers, use the portal to tell your patients how they can help you be most efficient. Have your EHR builders “put your heart in your letters” why this is a valuable resource, that you support it also.

• If the providers don’t trust it, neither will the patients, and then it [patient portal] truly is useless.

Take Aways?

No surprises here. When people in the business are honest about it, based upon my limited, informal sample, many just don’t buy into the patient engagement-Health IT hype.

Of the 70+ responses

• No one “believes” that health IT actually “creates or drives” engagement where it did not already exist.

• Many recognize that patient engagement occur between patients and their physicians – HIT is just useful medium for supporting that relationship.

• There are lots of problems with patient portals beginning with:Their purpose

• Who really benefits (clinician-patient-payer)
• Terms and conditions of use, e.g., legalese
• Relevance
• Usability
• Interoperability
• “Byzantine” Sign In and User ID Practices

• Some believe that portals actually caused them to “disengage” rather than engage

• How one “rolls out” their portal to patient and physicians is critical

The bottom line when it comes to portals I would offer the following advice:

1. Be clear about why you are implementing a patient portal
2. Involve patients (and clinicians) in the planning and development
3. Enroll clinicians to introduce portal to their patients
4. Be clear about what constitutes success, including how you will measure it

The Power Of Conversations Between Physicians And Patients

People always ask me how I got started with my work in physician-patient communications. Like so many people, I had a story that I felt needed to be told. Much of my inspiration over the course of the last five years of writing Mind the Gap have come from my wife and my journey as we deal with her Stage IV Lung Cancer.

But there was also a video I saw back in my blog’s early days that really gave me a sense of direction. A video featuring Maggie Breslin, at Mayo Clinic’s Transform 2009 Symposium. (Maggie is no longer with Mayo) At the time I was so taken with Maggie’s presentation that I pick up the phone and spoke with her about her “Power of Conversations” experiences. Well I rediscovered that video in a recent guest blog post on Mayo Clinic’s Center for Innovation Blog. The piece was written by by Nolan Meyer, a student at the University of Minnesota Rochester .

Here is Nolan’s post which includes the video. I hope it inspires you as much as it does me.

If you were to guess why patients consistently return to the Mayo Clinic and recommend the Mayo Clinic to friends and family, what reason would you venture? Unparalleled medical expertise? Superior technology? Prestige? Tropical weather conditions?

In contrast, the number one reason is not solely due to the excellent quality of care they receive. It is not that they receive pioneering procedures at a world-class academic medical facility, nor is it space-age medical technology. It’s not that they were prescribed miracle medications that exist nowhere else.

The reason patients return to Mayo Clinic is that providers here take the time to connect with their patients—to talk with them and ensure all their patients’ questions are answered. This connection forged between Mayo Clinic healthcare staff and their patients ensures the concerns of patients and their families are understood and fully addressed. Although the Mayo Clinic is a premiere and world-class academic medical institution, the meaningful connections made here between providers and patients are what bring people back again and again.

In a time of healthcare reform, extensive regulations, standardization, and malpractice suits, when many healthcare institutions have turned to emphasize numbers of patients seen over the overall quality of healthcare delivery, the Mayo Clinic has remained steadfast in its familiar maxim: “The needs of the patient come first.”

“I believe that if we make satisfying conversations and human connection the focus of our healthcare delivery development—if we make connecting people and having them talk to each other the single most important metric by which we judge all of our efforts—we will get everything else we want our healthcare system to be. Rich conversation is the pathway to quality, to efficiency, to affordability… when we have good conversations, we are practicing individualized medicine in its most authentic—it’s most human—form.”

Maggie Breslin, in a research-and-design effort put forth by the Center for Innovation’s Spark Design Lab, set out to find and address elements that enhance or impede quality of healthcare delivery. Maggie was granted access to observe healthcare interactions in various departments of the Mayo Clinic. During her time working on this project, Maggie observed thousands of healthcare interactions ranging from the mundane to the life-changing. Maggie observed everything from annual influenza vaccinations, to radiological studies, to discussions of unforeseen treatment complications, to emotionally wrenching diagnoses of debilitating conditions.

These thousands of observed interactions qualifies Maggie to tell us what quality healthcare delivery looks like, and according to her, it looks like a satisfying conversation. According to Maggie, quality healthcare delivery is “the most human thing you’ve ever seen in your life!” Working on this groundbreaking project, Maggie became familiar with four powerful insights regarding conversation in healthcare:

Conversation is how people determine quality and value.
Conversation has therapeutic value.
Conversation allows us to deal with ambiguity.
People seek out conversation, even when we make it hard for them.

While some of these observations may seem intuitive, they have fallen by the wayside in many modern medical institutions. The power of a simple conversation in a medical setting seems to have been deemed “nice-to-have,” but unnecessary and extraneous by many modern designers of healthcare delivery. This is an unfortunate trend, as the importance of translating advanced scientific and medical knowledge from provider to patient is more important now than ever. Maggie asserts that these satisfying conversations are not a “nice-to-have,” an extra, an unnecessary and time-consuming luxury in modern medicine. Quite the contrary: satisfying conversations are what Maggie calls “the very essence of healthcare delivery.”

Maggie relates a story in which she and her colleagues set about the hospital in search of factors which enhance or impede human connection. Her team found a startling pattern: the presence of human connection in healthcare delivery was, by and large, the result of the actions of outgoing individuals. In contrast, the absence of human connection was the result of often-unforeseen systematic hurdles. Maggie argues that in modern medicine, too many decisions are being made in the name of efficiency, standardization, legal requirements, documentation, and numbers.

All of these decisions contribute to the construction of what Maggie calls a wall between providers and patients. The inspiring thing, though, is that both patients and providers make what Maggie calls a Herculean effort to jump over that wall and find ways to connect with one another.

The Mayo Clinic’s efforts to recognize and address impediments to meaningful patient-provider interactions are an example of how it strives to provide the best patient care possible. Maggie Breslin calls on everyone involved in healthcare delivery and its design to ask themselves one question as they do their work: what kind of conversation will result from this concept? If the answer is “a better conversation,” then have that mean something!

Satisfaction With Provider Communication In Recent Study Is Lower In Patient Center-Medical Homes (PCMH) Than Non-PCMH

A recent blog headline on the Patient-Centered Primary Care Collaborative (PCPCC) recently caught my attention. It was entitled Patient Satisfaction With Medical Home Quality High. I was intrigued. I asked myself high compared to what? Non-PCMH practices?

The study, which appeared in the November-December 2013 Annals of Family Medicine, asked 4,500 patients (2009 Health Center Patient Survey) of federally-support health centers their perceptions of a number of “patient-centered quality attributes,” including the following measures which the study authors defined as patient-centered communication:

• Clinician staff listened to you?
• Clinician staff takes enough time with you?
• Clinician staff explains what you want to know
• Nurses and MAs answered your questions?
• Nurses and MAs are friendly and helpful to you?
• Other staff is friendly and helpful to you?
• Other staff answered your questions?

Observations About The Study

The first thing that struck me was that compared to patients in the 2012 CHAPS survey (AHRQ) website, patients in the 2009 study actually reported lower levels of 1) patient satisfaction (81% versus 91%) with their clinicians’ patient-centered attributes (including communication) and 2) willingness to recommend their providers (84% versus 89%).

The second thing I was reminded of is that patients themselves are so used to clinicians’ paternalistic, physician-directed communication style that simply allowing them to ask just one question puts the clinician in the top 5% of patient-centered communicators. Stop and ask yourself when the last time was that you encountered a physician that asked you what you thought about your medical condition? Until recently I never have been and I suspect few if any people in the study cited here have either.

[pullquote]Stop and ask yourself when the last time was that you encountered a physician that asked you what you thought about your medical condition? [/pullquote]

The final thing that struck me was that none of the quality measures used in the study captured the “essential and revolutionary meaning of what it means to be patient-centered.” As Street and Epstein point out, patient centered communication is about inviting the patient to get involved in the exam room conversation.

As articulated in hundreds of studies over the years, patient-centered communication skills include:

• Soliciting the patient’s story
• Visit agenda setting
• Understanding the patient’s health perspective
• Understanding the whole patient (biomedical and psychosocial)
• Shared decision-making
• Empathy

We Need To Raise The Bar For Patient-Centered Medical Homes (PCMH)

Studies like the one cited here set the quality bar (and bragging rights) way too low for PCMH. Patient-centered care has to be different than the paternalistic, physician-directed care we all seem so willing to accept. Such studies trivialize what it means for physicians and their care teams to be patient-centered in the way they relate to and communicate with people (aka patients). Patient-centeredness is a philosophy or care…and does not require team care, extended hours or care coordinators. These are great added features, but to equate such services with patient-centeredness misses the boat…something which professional groups like the PCPCC, NCQA, Joint Commission, and URAC should recognize by now.

The Take Away?

Here’s some thoughts:

1) We need to set the bar higher for PCMHs when it comes to how we define and measure patient-centered communication.

2) We need to find better ways to asses patient-centered communications in actual practice. Patient rating of a clinician’s patiient-centeredness are simply not enough. As part of the 2014 Adopt One! Challenge, we will be using audio recording of actual physician-patient exam room conversations to measure and benchmark clinicians’ patient-centered communication skills.

3) We should stop celebrating being average whether it be in PCMH setting or hospitals when it comes to physician-patient communications.
That what I think. What’s your opinion?

Sources:

Lebrun-Harris et al. Effects of Patient-Centered Medical Home Attributes On Patient’s Perception Of Quality In Federaly-Supported Health Centers. Annals of Family Medicine. 2013; 11:6; 508-516.
Street et al. The Value and Values of Patient-Centered Care. Annals of Family Medicine. 2011; 9; 100-103.

Engage Your Patients And Members Where They Are…Not Where You Wish They Were

Not long ago, Lloyd Dean, president and CEO of the San Francisco-based health care-system Dignity Health announced the Dignity Health and Box Patient Education App Challenge. In the course of the announcement, Dean is quoted as saying:

“We recognize the immense potential that (health information) technology has to enhance our patients’ care and overall experience.”

Dean’s use of the term “immense potential” with respect to patient-facing technologies like health apps and patient portals got me thinking. Immense potential compared to what? [pullquote]Dean’s use of the term “immense potential” got me thinking. Immense potential compared to what?[/pullquote]

With all the hype in the health press about the patient engagement potential of patient-facing health information technologies, one could be forgiven for thinking that HIT is the best if not only path to patient engagement. But in fact there is another way. Another more immediate, less costly and proven way. And its potential to engage patients, enhance care and improve patient experiences dwarfs the “immense potential” of patient-facing HIT by comparison.

PC Communications vs HIT
Rediscovering the Power of Physician-Patient Exam Room Conversations

Here’s what I mean. The average office-based physician engages in some 4,224 face-to-face visit-related conversations with patients each year. Depending upon their communication skills, each of these conversations represents an opportunity for physicians to engage patients, enhance care and improve patient experiences.

In the case of Dignity Health’s 11,000 physicians, assuming they see an average of 20 patients/day/physician, this comes out to:
220,000 patient visit per day , 880,000 patient visits per week 45.7 million patient visits per year

Now factor in the 3-4 complaints each patient brings to the visit along with a myriad of beliefs, fears and expectations for service (tests, referrals, new medications, and so on). I hope you are starting to realize that each patient visit is pregnant with opportunities for clinicians – your clinicians – to engage, empower and excite patients…. sometimes by doing nothing more than listening to what the patient wants to say. Remember these are real opportunities that exist in the here and now…not some promise or dream of possibilities to come.
3-4 Complaints + 2-3 Requests + 4-5 Expectations = Lots Of Opportunities To Engage Patients

At this point you might be thinking that your physicians are already leveraging these exam room opportunities to build your organization’s brand, to refer patients to your specialists and ancillary services, and to direct patients to health information on your their/your patient portal. You would probably be wrong. Not because of the limited time available during the office visit…but rather because many physicians have never been trained or provided with the communications tools needed to recognize or facilitate these kinds of opportunities. But that is the topic for a separate post.
The Patient-Facing HIT Opportunity

Now consider the opportunities in Lloyd Dean’s brave new world…a vision shared by HIT professionals health developers, vendors and their respective professional organizations.

Staying with the Dignity Health example, let’s assume that each of Dignity Health’s 11,000 doctors have patient panels of 2,300 adults and that 10% of these people use their respective patient portals or smart health apps 5 times per year (a generous assumption). This comes out to approximately 12.6 million opportunities for Dignity to engage, empower and excite patients/consumers per year.

It’s doubtful that the opportunities for meaningful engagement afforded by a patient portal or health app compare qualitatively to the opportunities possible with a face-to-face physician visit. Being able to check one’s lab tests, schedule an appointment, or refill a prescription while convenient are do not afford the same therapeutic benefits of a listening ear or the touch of a clinician’s hand.
The Take Away

The real “immense opportunity” for engaging patients, enhancing patient care and improving patient experiences lies behind the closed exam room doors of physicians. That is the most frequent point of contact health care consumers have with the health care system. It is also where truly meaningful patient engagement and memorable patient experience take place.

Engaging patients, enhancing care and improving patient experiences is not an either or choice between more health IT or better physician-patient communications. Providers will need both in the long run. HIT will enable clinicians with good patient communication skills to touch more patients and get more done. Physicians in turn will recommend that patients go to their patient portals and smart apps for health information.

Imagine the ROI that organizations like Dignity Health’s could realize from their investments in patient portals and health apps if all 45.7 million annual patient visits were given a tailored information therapy prescription directing them to one or the other or both.

Now that is what I call IMMENSE POTENTIAL!

That’s what I think….what’s your opinion?

Helping physicians, hospitals and health plans do a better job of engaging patients, enhancing patient care and improving patient experiences in the exam room is the goal of the Adopt One! Challenge. The Challenge is a great way for physicians to get a comprehensive baseline assessment of their patient communication skills, find out how their communication skills compare to best practices, and get access to online skills development tools.

Be sure to sign up for the Adopt One! Challenge Newsletter for more information. Health plans and hospitals are invited to sponsor the Adopt One! Challenge for physicians in their provider network, including PCMHs and ACOs.

Death By A Thousand Cuts – Physicians’ Surprising Response To My Wife’s Lung Cancer Recurrence

This is a true story….

My wife was about to celebrate her 10th anniversary as a Stage IV Non-Small Cell Lung Cancer survivor (a pretty remarkable feat) when it happened.

It started out as a cough.  We had just returned from a family trip and assumed she had picked up a “bug” from one of the boys. It also “lite up” on her semiannual PET/CT scan down at MD Anderson as small dark masses where there weren’t supposed to be any. We all hoped the cough and the PET/Ct results was the result of a cold or allergy….it had happened before. Her medical oncologist, one of the top thoracic oncologists in the world, doubted a recurrence after 10 years.  But if it was a recurrence, he told us he would put my wife back on Tarceva, the oral chemo that had worked so well for her before.

But we were all wrong. Her lung cancer was back and appeared to have spread.  The cough escalated into a 24/7 serious hack-a-thon.  She couldn’t finish a sentence without coughing.  We avoided being around other people as the coughing got worse. My wife didn’t want “bother” people.  Nor did we want our family and friends to get the wrong impression….that my wife was dying. She had beaten the odds once and she would do it again we told ourselves.  Turns out we were the only ones that believed it.

Within the space of 2 months, my wife saw a local pulmonologist (we live in Northern California not Houston, Texas where MD Anderson is) to rule out any other causes for the cough.  She also kept two long-scheduled appointments with an endocrinologist and a cardiologist for issues unrelated to the cough or cancer.

That’s When I Noticed It – Every Physician My Wife Saw Acted As If She Would Be Dead Soon

To be sure none of my wife’s physicians ever said she was dying. But knowing something about the nuances of how physicians “communicate” with patients I could tell that’s what they were thinking.  After attending every one of her doctor’s appointments over the last 10 years you recognize the tell tale signs.   Neither the endocrinologist or cardiologist were familiar with my wife or her condition as these were our first visit to both.  But they clearly could not get past her coughing.  They politely cut short the initial appointment and told my wife to contact them after the lung cancer had been dealt with.  You have bigger problems than a thyroid nodule or a rapid heartbeat they told us.

Mind you my wife was concerned enough (let’s say she was engaged) about her thyroid nodule and heart health that she 1) made the appointment to be seen and 2) actually kept the appointment because she/we believed that she would be around long enough to have to deal with these problems sometime.

The pulmonologist, after ruling out allergies or infectious disease as the cause of my wife’s cough, threw up his hands in apparent defeat and said “your cancer’s back and there’s nothing more I can do for you. “ He referred us to a local a local thoracic surgeon in order to get her cancer re-biopsied before starting chemo.

The thoracic surgeon, like the other doctors, couldn’t deal with my wife’s coughing and shortness of breath which was pretty bad by now.  Rather than come up with a definitive plan of action regarding the biopsy, the surgeon hemmed and hawed about the different approaches to doing the lung biopsy – one more invasive than the other.  The surgeon gave me the distinct impression that the biopsy in the long run wouldn’t matter given the apparent seriousness of my wife’s condition.  He promised to discuss the biopsy options with my wife’s oncologist the next day and call us with the “game plan.”  The doctor never called us back.

By this time it was 5:00 pm on a Friday afternoon.  We felt we had already wasted too much time between the pulmonologist and the thoracic surgeon and my wife started her oral chemo at 5:01 pm.  We immediately felt better because at least we were finally doing something positive to address my wife’s problem.  Anything is preferable to watching sympathetic physicians, nurses, office staff, radiology techs, etc.  shake their heads saying to themselves “poor woman” doesn’t have long to live.

Post Script

Within 10 days of starting her oral chemo, my wife’s cough and shortness of breath completely disappeared.  After 2 months of being on Tarceva the first follow up the first PET/CT scan revealed what the radiologists called a significant response to the treatment.

Not bad for someone whom so many clinicians had written off!

The Take Away

Physicians need to be aware of the fact that they both bring pre-existing attitudes and biases to the office visit…and check them at the door.  These attitudes and beliefs color the decisions clinicians make.  The extent to which clinicians inform patients of all their diagnosis and treatment options, engage patients in shared decision making, or decisions as to how aggressively treat the patient’s condition are all influenced by physician’s beliefs and attitudes.

Lung cancer that presents as a bad cough is like a red flag to a bull. It invokes a whole set of assumptions about 1) how the person got the disease (you must have been a smoker) and 2) the person’s odds of survival – slim to none.

You have to wonder how many people’s lives are cut short or whose care is not what it should be simply because their doctor jumped to the wrong conclusions.

That’s what I think. What’s your opinion?