Why Patient Engagement Really Does Matter and Why So Many People Are...

Why Patient Engagement Really Does Matter and Why So Many People Are Getting It Wrong

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“Patient engagement.”

What is “Patient Engagement?” It sounds like a season of “The Bachelor” where a doctor dates hot patients. It wouldn’t surprise me if it was. After all, patient engagement is hot; it’s the new buzz phrase for health wonks. There was a even an entire day at the recent HIMSS conference dedicated to “Patient engagement.” I think the next season of “The Bachelor” should feature a wonk at HIMSS looking for a wonkettes to love.

Here’s how the Internets define “Patient engagement”:

The Get Well Network (with a smiley face) calls it: “A national health priority and a core strategy for performance improvement.”
Leonard Kish refers to it as “The Blockbuster Drug of the Century” (it narrowly beat out Viagra) – HT to Dave Chase.
Steve Wilkins refers to it as “The Holy Grail of Health Care” (it also narrowly beat out Viagra) – HT to Kevin MD.
On the HIMSS Patient Engagement Day, the following topics were discussed:

-How to make Patients Your Partners in Satisfying Meaningful Use Stage 2 Objectives; Case Studies in Patient Engagement, session #64;
-Review Business Cases for Implementing a Patient-Centered Communication Strategy and Building Patient 2.0, session #84;: and
-Engaging People in Health Through Consumer-Facing Devices and Tools, session #102.

So then, “patient engagement” is:

-a strategy
-a drug
-a grail (although I already have a grail)
-a “meaningful use” objective
-something that requires a business case
-something that requires “consumer-facing devices and tools” (I already have one of those too).

I hope that clears things up.

So why am I being so snarky about this? Why make fun of a term used by many people I trust and respect? I was recently discussing my ideas on a communication-centered medical record with a colleague. At the end of my pontification, my friend agreed, saying: “you are right; communication is an important part of health care.” I surprised him by disagreeing. Communication isn’t important to health care, communication is health care. Care is not a static thing, it is the transaction of ideas. The patient tells me what is going on, I listen, I share my thoughts with the patient (and other providers), and the patient uses the result of this transaction for their own benefit.

But our fine system doesn’t embrace this definition. We indict ourselves when we talk about “patient engagement” as if it’s a goal, as it reveals the current state of disengagement . Patients are not the center of care. Patients are a source of data so doctors can get “meaningful use” checks. Patients are the proof that our organizations are accountable. Patients live in our “patient-centered” medical homes.

Replacing patients as the object of our attention (and affection) is our dear friend, the medical record. We faun over medical records. Companies earn epic profits from medical records. We hold huge conferences to celebrate medical records. We charge patients money to get to see their own medical records. We even build special booths (portals) where patients are allowed to peer in through a peep hole and see parts of their medical records.

This is why I’ve had such a hard time finding a record system for my new practice. I want my IT to center on patients, but medical record systems are self-absorbed. They are an end in themselves. They are all about making records, not engaging patients. They are for the storage of ideas, not the transfer of them. Asking medical records to engage patients is like asking a dictionary to tell a story.

The problem is, documentation has taken over health care. Just as the practice of a religion can overshadow its purpose: the search for God, documentation chokes out the heart of health care: the communication of ideas . It did this because we are paid to document, not communicate. Communication takes time and it is not reimbursed. Communication prevents unnecessary care, which is a revenue stream. Communication eliminates waste, and waste is food that feeds the system, the bricks that build the wings to hospitals, the revenue source that pads IT budgets.

So what’s a doctor to do? I’m not sure. I am still looking for a solution that will meet the central goals of my practice:

Communication – health care is a hassle, with communication relegated to the exam room. I want care to be easily accessible for my patients,using IT in one of its strongest areas: tools for easy communication.
Collaboration – the patient should be engaged, but in a two-way relationship. This means they not only should have access to their records, they should contribute to those records.
Organization – I want a calendar documenting visits, symptoms, problems, medications, past and future events in each patient’s record. I also want a task-management system I share with patients to make sure care gets done.
Education – I want to practice high-quality medicine, care that is informed by good information and the best evidence. Why not do a yearly stress test? There’s evidence for that. Why not use antibiotics for sinus infections? There’s evidence there. Why use an ACE inhibitor to control the blood pressure? I need to be able to support my recommendations with data, not just “because the doctor said so.”

The point of all of this is the moving of medicine from an industry where money is milked from disease to a communications network where diseases are prevented. ”Patient engagement” that is done to the patient for the sake of the doctor or hospital is a sham. Engagement is about interaction, listening, and learning in relationship to another person. Engagement is not a strategy, it is care.

If only I could find the tools to make this happen.

Rob Lamberts, MD, is a primary care physician practicing somewhere in the southeastern United States. He blogs regularly at More Musings (of a Distractible Kind),where this post first appeared. For some strange reason, he is often stopped by strangers on the street who mistake him for former Atlanta Braves star John Smoltz and ask “Hey, are you John Smoltz?” He is not John Smoltz. He is not a former major league baseball player. He is a primary care physician.

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64 Comments on "Why Patient Engagement Really Does Matter and Why So Many People Are Getting It Wrong"


Guest
Mar 12, 2013

You already have the tools to make this happen. You were born with them, and so did your patients.

Have we devolved to such miserable levels that we need machines to do something that we’ve been doing for millions of years and better than any other life form on the planet?

Guest
Mar 12, 2013

I am talking about the IT tools. I cannot use my own brain to share lab results remotely, organize a record, or securely communicate with a patient. There are bits and pieces in different places, but no easy tool to help me do this kind of practice in the way I think it could be done.

Guest
Mar 12, 2013

Rob, please don’t take this the wrong way, but you are thinking in terms of what is now the “accepted” solution, instead of in terms of the problem you are trying to solve.
Why do you need to “share lab results remotely”? Sounds like one of those MU things. What you probably want is to communicate lab results to your patient in a timely manner, while the patient is not in physical proximity to you. If this is correct, a nice long phone call would be so much better, after which you could send/post the actual results as well, if the patient wants them. If it’s some life altering result, maybe you can drop by and have a cup of tea…..
I know I’m being unreasonably ridiculous here (for illustration purposes only), but I thought this was the point of leaving a system that does not value people and human interaction….

Guest
Mar 12, 2013

I left the system because it didn’t value quality care. I want my patients to have 24-7 access to their information, presenting it in a fashion that will be useful for both them and anyone who takes care of them. I believe in patients owning their records and collaborating with me. There is no way to do this without leaning on tech. I talk to patients much more than I did in the old practice, but I don’t pretend people want to spend lots of time on the phone with their doctor. I give that when they need it, but otherwise I use the tools of IT to make the process of care more accessible, efficient, and affordable.

I am not sure why people keep thinking I would want to abandon IT. I abandon tools that disconnect me, and some of the tech (EMR’s) push me away from patients (although they didn’t always do so). It is the payment system, however, that really pushes me away from the interaction. What’s the difference between writing a note and calling? They both use tech, but email is less intrusive and easier for both. My patients are just happy that they have me, be it on the phone, in person, or via email. I use whatever works, and tech is fabulous for communication. Why not use all of the tools I have?

Guest
Mar 12, 2013

Perhaps these are two different things. Having 24-7 access to medical records does not equal (in my mind) to communications and engagement. Actually, I have no idea what is meant by engagement.
I don’t think anyone should abandon IT (or phones, or paper, or smoke signals). IT is great, but IT is not a solution. IT is the means by which solutions may be provided. Personally, I think that much of the shortcomings of current IT are due to people not taking the time to properly formulate problems, and instead everybody is just surveying the coolest IT gadgets trying to figure out a way to plop these things into their workflow. (I should have part III of my futile EMR design exercise out later this week, if you want more details)

And by the way, as long as “patient engagement” is considered a “cost reduction” “strategy”, it will fail. This is like that Chinese fingers trap – the harder you try the worse it becomes. If people just relaxed a little and trusted that good basic care on a basic human level is the right thing to do, the money will take care of itself. And so will the IT enabled tools…

Guest
southern doc
Mar 12, 2013

To follow up on Ms. Gur-Arie, I think you’re overestimating what IT can do, and underestimating what you can do as a dedicated, compassionate doc.

I’ve never known anyone to get healthier due to having 24/7 access to their information, but I do know thousands of paeople who are healthier because they have developed a relationship over time based on mutual respect and trust with a caring doc.

IT is JUST a tool.

Guest
Mar 12, 2013

The starting point is a caring and compassionate person who is open to communication. I agree. Technology does not make that happen. But technology is a very powerful tool, giving people access to me and access to their information when they need it. I agree @southerndoc that compassion is the base, but access to information DOES save lives and it allows better care. I have seen many people get unnecessary and harmful care as a result of bad information. I also believe that engaging the patient in the record enables them to care for themselves.

Guest
Perky Patient
Aug 15, 2013

You sound like an awesome physician. Wow. I’m packing my bags and moving to where ever you live. I have nightmares about doctors forgetting to read my lab results, radiology reports, surgical reports, and then dying a terrible painful death. I wake up and realize it isn’t a nightmare. Glad you turned out to be a good doctor and a good man. Lots of patients are blessed to have you.

Guest
Mar 12, 2013

I love this quote “Communication isn’t important to health care, communication is health care. ” Looking at patients as simply a way to get reimbursed is a short term outlook and does nobody any good.

Guest
JayM_HealthIT
Mar 12, 2013

“He says he’s already got one!”

Guest
Mar 12, 2013

I also have a shrubbery.

Guest
Craig "Quack" Vickstrom, M.D.
Mar 12, 2013

Did you get it from Roger the Shrubber? He arranges, designs and sells shrubberies you know!

Guest
JayM_HealthIT
Mar 12, 2013

Your such a great resource, I hope you continue to share your ideas and insights. I have been looking for the tools you describe and I’m pretty sure there isn’t a single package out there. However, I have been finding piecemeal solutions to meet a number of your requirements.I dont want to name drop but there are portals, secure txt messaging , Clinical decision support add-ons. the only thing I haven’t been able to find is a good data visualization tool that can present that time-line you’re after…
but I am working on it. =D

I wonder if you’d be willing to share what technologies you HAVE decided on thus far in your alternate payment practice , and what works and what doesn’t?

Guest
May 31, 2013

I agree, Jay, that the plug and play system or systems will change everything. Once data is separated from the apps it will allow many more tools to be created without the tyranny of the big systems and the interface requirements. The “n of 1” trials (supported by NIH) are creating a paradigm of data gathering and communication unheard of before in healthcare. And it must be intuitive – I recently ran into someone who created an app for rheumatoid arthritis (MyRA), now available at no cost from Apple, that does that and can print a paper report you can bring to your doctor! Digital, meet paper world! If a patient is tracking symptoms and trying to manage their RA daily, might it be helpful if a physician could see that data more often than every 4 months? Just a thought…

Guest
Stesha
Mar 12, 2013

Great article. I definitely hope that the new generation of physicians will be able to find a way to figure out what the key to patient engagement is and fix the way we’ve been doing things!

Guest
Craig "Quack" Vickstrom, M.D.
Mar 12, 2013

As we didn’t break it we can’t fix it. It was broken by our third party payroll system.

Guest
Mar 12, 2013

I make this point in the post: communication is anti-health care system, it undermines the financial structure of the system. But as someone for whom that does not apply, I look around for solutions and don’t find a single solution (as Jay says). If such a system were built on a small scale, supporting the payment structure I am in, then perhaps the concept could be proven worthy and the path to this place wouldn’t be as difficult. People need to be told what they should expect from health care, as their expectations have been eroded by our system. We need to raise the demand for real care, real engagement, and a better system. Build it and they will come.

Guest
Craig "Quack" Vickstrom, M.D.
Mar 12, 2013

Indeed. Doctor is Greek for “teacher” unless I am mistaken. Whenever I can get a few minutes here or there, I try to go back into teacher mode (I used to be a high school science teacher) and explain to the patients how they got their problem and how to fix it. Sadly, I have to “cheat” the system in order to do this.

Guest
killroy71
Mar 12, 2013

true, but do you really want to have the “how much does this cost” conversation with every patient about every procedure, test or treatment?

Guest
Craig "Quack" Vickstrom, M.D.
Mar 12, 2013

Of course not. That’s why I’d like a state or national health service so I could just concentrate on education.

Guest
Dr. Rick Lippin
Mar 12, 2013

“The point of all of this is the moving of medicine from an industry where money is milked from disease to a communications network where diseases are prevented.” says the author

He is of course correct but most Docs cannot yet accept this radical shift.

Does “change or die” apply? I think so.

Dr. Rick Lippin
Southampton,Pa

Guest
Mar 12, 2013

hmm…
Patient engagement is quite hard. It’s been tried by disease management through health plans and by wellness through employers and failed both times. That’s why the chapter in my next book (Cracking Health Costs — website of same name if anyone wants a pre-release copy) on patient engagement in ACOs is called “Deju Vu All Over Again, Again.”

Yes, it will work better if the PCP is doing it but it has to — it also costs far more.

Next, it’s overrated. If I did everything my doctor wanted me to do, it would have cost $20,000 to my health plan and I’d probably be worse off. True, that is the exception but you can’t automatically assume that persuading a patient to do something is the right answer.

On balance, will be make a difference? Yes, but marginal, like most other things. Fact is, there is no magic bullet, no button to push that makes health care affordable and effective. As my last book said: “Everything in life has an 80-20 rule. In health care, the 80-20 rule is that 80% of the time, there is no 80-20 rule/”

And yet I go to conferences and here ACOs talking about how they are going to get this massive ROI through patient engagement. Maybe on their planet but here on earth we’ve done this before and it’s failed.

Guest
Mar 12, 2013

Within the current system it is overrated. The system calls the shots and undermines the success of anything that reduces cost. When the system thrives on waste and overspending, the best results you can expect from attempts to reduce that cost are mediocre ones at best.

Guest
Dan Maceda
Mar 12, 2013

I’m a patient of the GeorgeWashington Medical Faculty Associates in DC. They have a system MY Health which appears to do all that you suggest however it does not have a means to tell the systems support people there are bugs which need to be fixed, It does have an email capability and the doctors are pledged to responding within two business days . Some do,some don’t . There is the ability to make and cancel appointments , request refills of medications ,see test results , See a list of conditions , allergies etc. The patient has the aility to update information. If you’re interested you should review it and see what you think.

Guest

Terrific post Rob!

“Patient engagement” done to the patient for the sake of ACO’s reducing utilization and healthcare costs is also truly a sham.

Al Lewis above mentions “patient engagement” being done by insurers and disease management, and says it will cost more if done by PCPs. I assume he’s referring to efforts which should – but often aren’t – about effectively collaborating with patients so that they can better meet their health goals, which often (but not always) results in fewer hospitalizations.

Of course we PCPs should be doing this, and yes, it will in the short-term cost more for you and me to be doing this, AND we can probably do it more meaningfully and effectively.

In the long run, good comprehensive primary care leads to more cost-effective healthcare. (I know that as a geriatrician, I help many elderly patients reduce their use of procedures that are unlikely to help.)

But you need good comprehensive primary care, which many hospitals and other power players must be somewhat ambivalent about…

Guest
Mar 12, 2013

In reality, hospitals and other “power players” are ambivalent about anything that reduces health care cost because it decreases revenue. True reform will result in significant downsizing of their businesses (healthy people = less need for hospitals, etc). This is, in my opinion, why reform must start from those of us with the least reason to have our patients sick.

Guest
Robert W. Geist MD
Mar 12, 2013

“…we are paid to document, not communicate.”

So true. Excellent article! Thanks,

Bob

Guest

Great point. It’s hard to imagine why patient engagement wouldn’t be seen as critical.

Guest

Excellent article. “True” patient engagement is bringing a partnering attitude and skill set to the point of care that allows the patient to express what his real issues are about his condition, which in the end creates a shortcut to lower costs, active patient participation, better time management, and increased satisfaction for both practitioner and patient.
Case in point:
Kudos to the physician in the MidWest who asked his very non-compliant diabetic male patient (a 42 year old newlywed who had already experienced a CABG), what his greatest concern was about his health. The patient replied, “my impotence.” Typically a practitioner may have only saddled him down with a change of insulin, other meds, and diet orders, as well as other “do as I tell you” instructions.
Instead, the physician followed up by saying, “If you’ll partner with me in this, we’ll reverse it together.” He made the patient’s goal his own, drilling down to what the patient’s actual struggles were with his diabetes. Six months later, the patient’s diabetes was under good control for the first time in his life.
Tapping into the patient’s own desire for change or action is true patient engagement. It’s shedding our traditional “do as I say according to my agenda” and using skillful conversation to partner and engage according to theirs! The tools and skills are available for the taking!

Guest
killroy71
Mar 12, 2013

You are spot-on with this post. In fact, I will now class the term “patient engagement” with “employee empowerment.” To quote a vintage and still favorite Dilbert cartoon: “If I’m really empowered, do I need you to tell me?”

But this is still a legitimate goal, one that both doctors and patients need to work on. Doctors can make a giant leap forward by being consultative (“what do you want to accomplish with treatment” or “best evidence shows…”) rather than dictatorial (“do as I say”).

There’s not really any question that doctors are in charge of the relationship, and as with any transactional relationship, when one party changes its behavior, the other must, also.

Guest
Barry Carol
Mar 12, 2013

For years, I’ve requested copies of records like blood test results, imaging results, operation reports, colonoscopy results, etc. and stored them all in three ring binders. I have almost never asked for office notes, however, but they would probably be hard to read and organize even if I did unless someone typed them into a computer to make them legible and searchable.

What happens if my trusted doc retires or relocates or dies? What I would really like is an interoperable and searchable record of all services, tests, and procedures I’ve had as well as the drugs I take that can be stored in the cloud and easily accessed by me and any doctor that needs to treat me or from any hospital or clinic that I might wind up in. Is such a system likely to arrive anytime soon? Maybe Margalit can answer that.

As for the revenue issue and the associated need for documentation, if we can get to where we pay for value instead of volume and move away from fee for service in favor of something like global payments, I think that would be helpful though the transition will be difficult. The higher quality and more efficient providers could sustain their revenue by treating more patients with the same infrastructure and take market share away from higher cost lower quality hospitals and doctors.

Guest
Mar 12, 2013

Like everything else in health care, the answer is both yes and no, Barry.
There are systems today, in the “cloud” like you want them to be, where if you are willing to do the aggregation work, you could upload copies of all those three ring binders, and with a little bit of luck maybe get some structured data from your doctor and maybe, but not very likely, hospital. Obviously your copies would be scanned images and although there is software that can search and “read” those things, it is not very reliable. You could give another doctor or facility access to this personal health record (PHR) if you wanted to, and if the doctor or hospital was kind enough to agree to look at it, you will have the desired effect.

To get to where you really want to be, you would need all care providers to agree to some sort of electronic transfer of your information, preferably to your PHR, but maybe just to your computer in a standard format (like banks do for QuickBooks), and you could upload the data to the PHR yourself. This is actually in the works. It’s called Blue Button and it’s still pretty rough, but several systems/vendors, including the VA, have it working. There is a lot of pressure from all sorts of quarters to accelerate these types of abilities, and the federal EMR incentives include a requirement that complete medical records should be made available to patients in electronic format upon request, in addition to timely access (including ability to download) to intermediate results and clinical summaries. Better than the paper binder, but not quite there. Also, you need to understand that PHRs are not covered entities and HIPAA does not apply to these cloud based software products, so caveat emptor applies.

Of course, the holy grail would be for all hospitals or clinics that need to treat you to be able to easily request and access this information directly from the previous providers systems, just to be sure that it’s not redacted or tampered with in any way (patients come in many varieties) and that it is complete and up to date, so they can merge it into their own system now that they are the ones treating you.
This is harder, as I’m sure you know that “EHRs can’t talk to each other”. Well, they can and they do, but not always in a structured language, and this is very much like exchanging PDFs, plus limited but important data points (vitals, meds, diagnoses, demographics, etc.). They are working on standards and requirements and transport protocols and frameworks and all that. It should all improve in the next few years.

Starting here this is my opinion only: The problem, again as usual, is the business model. My feeling is that as the delivery system consolidates, the gardens will get larger, but the walls will also get much taller. As ACOs and narrow networks attempt to keep the patient in, it makes no sense to give patients the ability to shop outside the risk taking organization. So if you stay in one of those things, like say, Kaiser, the hospitals and clinics will have access to all your information and you will have access to it through the patient portal, and you can presumably download it all if you switch to another ACO or insurer, unless customer retention needs take precedence over your needs, of course. But that’s as far as I think this will go. I hope I’m wrong.
And I hope we eventually reach a point where society is advanced enough and free enough to allow us the creation of one universal health record for each person…. like they have in StarTrek….

Guest
Mar 12, 2013

Patients should and always needs to have full information on any updates regarding their situation be it good or bad. In addition to that its very important that the patient has a doctor he/she trusts that she can confide on encase there are further issues regarding their health or that may affect their overall health.

By the way I like your posts its very informative and interesting!