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

“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.

64 replies »

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  3. Well said article and informative too!!Patient Engagement is not all about just engaging the patients. Patient Engagement system is an interactive medium for patients and Health & Life Sciences organizations to improve health outcomes. Since people are becoming very informative and healthcare service providers are turning into more dynamic in terms of engaging their patients. iLink is exclusively focused on Patient Engagement system and offer implementation and support services, education, and software enhancement services through its Patient Engagement Framework.This helps them to become more informed and active in managing their personal health.To know more please visit us @ http://www.ilink-systems.com/Technology/RelatedFramework/PatientEngagement.aspx

  4. 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.

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  6. I think for the most part it’s common sense. Patients are people after all. Engage them, make them feel accepted and special and they will be loyal. I know I miss this with most doctors I visit. I feel like they are looking down on me; which is unfortunate. I’d be loyal to a doctor who lets me take an active role in my health care by showing me how to…take my own blood pressure for instance or real steps to take rather than a blanket you should lose 5 or 10 lbs.

  7. 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…

  8. I enjoyed this article very much! I agree, patient engagement must be at the forefront of attaining meaningful use stage 2 for a successful EMR system. Healthcare practitioners need to understand and emphasize the value of patient engagement since patients are the primary stakeholders who rely on Healthcare IT systems.

  9. Entertaining but accurate assessment of how many folks see Patient Engagement. It’s as though technology and the medical record will now enable physicians to finally engage with their patients.

    There is way too much emphasis on IT in this arena. The real opportunity will come into scope when healthcare is truly accountable, with proactive providers having the strategy and plan to influence their entire population toward better health and well-being.

  10. Great article – I agree with you on several of your points. However, regarding you wishing for a tool to help with your points not being available – I certainly believe it is.

    Using a downloadable smartphone application patients have the access they need to track their health before, during​,​ and after their hospital or clinic visits. Patients need to be able to take control of their own health and with 125.9 million smartphone owners in the US – this is the best (and most convenient) tool out there to help them do just that.

    Communication – The app allows you to ‘opt in’ which allows all info you track (glucose levels, weight, blood pressure etc.) to sync with the hospital or any care provider you choose. This opens the gateway between patient and medical staff – resulting in benefits for both parties – reducing readmission, improving HCAHPS but, most importantly to the patient, also making the patient feel connected and acknowledged = a tool for easy communication.

    Collaboration – This app is totally customizable and branded to the hospital. Not only can care providers easily respond the the data they are receiving on the patient but – they can add additional tools to the app to better help the patient contribute to their own health – for ex. creating health reports out of their tracked data. This added to their EHRs can give the medical time a larger spectrum of information usable to help treat the patient.

    Organization – This is easy – the App is organizing all the tracked data for you (see http://www.axialexchange.com for visuals of application and how easy and organized the tools within the app are to use)

    It already has embedded the symptoms, problems, medications, past and future events in each patient’s record. Along with, mood tracker, weight, blood pressure, health insurance ID card info and pictures.​ ​Once again, its totally customazable – therefore it can have a calendar documenting visits.

    All this data​,​ once ready to be sent to necessary contact, is organized neatly and automatically in a spreadsheet embedded into the email.

    Education – The patients are also able to view the Mayo Clinic’s medical library in the palm of their hands – looking up based on symptoms, diseases tests and procedures – as well as general health tips. The result is patients not coming in totally in the dark and being more aware of what is to come next regarding their help.

    Granted the​re ​may be skeptics but – for me – this app touches on each individual case you make in the above article and should be ​a ​utilized tool within the healthcare system and provided (or rather, prescribed) ​to all patients.

  11. Let me offer a perspective from someone in the Canadian system. “Quack” Vickstrom and Mighty Casey hit the nail when they pojnt out that the payment system is the problem. But Quack wants a national or state system because he thinks it would help him spend more time on patient education. Think again, and be very careful what you wish for.
    “Single payer” systems sound great in theory, and they do reduce the paper workload, which the US system needs desperately. But government-run systems always, always result in shortages because the only way they know how to control costs is to cut money blindly. This results in doctor shortages and forces the docs to see as many patients as they can to maintain their income stream. No time for engagement or even for thoroughness. He who pays the piper calls the tune.
    The worst thing any single-payer system may do (whether insurance-based or government based) is to give an annual chunk of money to a hospital, or to place limits on the number of appointments for each doc or each patient. What this does is devastating to patient engagement because patients are no longer a source of revenue, they are liabilities. No more friendly patient-centered care, when the objective is to be miserly with third-party money.
    Whatever you do, do not take from the patient the choice of what to consume and therefore the power to call the tune. Your high-minded standards will erode when you are always battling the bureaucracy.

  12. Fred

    There are to my knowledge not any off the shelf tools that will do what you need but there are some currently available tools that will effectively and rapidly allow integration of such different data sources/sets and put that creation of that in the hands of actually users.

  13. “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.”

    What is your ideal? What functions are the most important and how do you want them to work? Ex/ I want my pt to be able to send secure pt msgs to me and receive them in my EHR. I want my pt to be able to update a BP flowsheet online. I work on portals that run off one of the big, expensive EHR vendors. I don’t know much beyond how this vendor’s software works but it seems all the functions you mentioned and more are existing currently. I’m curious to know if the software that’s out there has the functionality you need, and would be usable if it didn’t cost so much money.

  14. Patient interaction is everything in healthcare! Diagnostics, history, symptoms, response to treatment, missing information, education. Many systems to date have not provided adequate means of access to their Dr. It is all about connection. Even using an online opportunity to communicate status, concerns, request directions, referrals, etc. is a tremendous benefit to healthcare provider/patient communication and understanding. DN

  15. Thank you for writing this. I’ve already quoted this post in several ongoing discussions – it is exactly on point.

    Here’s another perspective from a patient with IBD, posted on the ImproveCareNow LOOP Blog “Nobody puts baby in the corner (or a space saving bag)


    From the post: “But the best doctors are the ones who suffer alongside you, who see the pain you’re too proud to admit to, who are normal and everyday and accessible and in that way wholly incredible and wonderful. And the best patients are the ones who never pass up the opportunity to teach a doctor, a nurse, or a medical student. The relationship between a patient and a doctor is dynamic and constantly evolving, and only when we can understand and respect it as a process will we ever be able to meaningfully work together”

  16. I find this co-creation concept very intriguing. Is this like coaching patients and families to interact more constructively with clinicians, and likewise coaching clinicians in how to do the same?

  17. Thank you for putting voice to these ideas! I am an advocate for increased communication WITH patients. And in today’s world, they rely on and utilize many forms. And as a nurse I especially like your calendar idea. That would be so helpful.

  18. For a truly patient centered, patient engagement software program for your practice, check us out on the web at http://www.solutionreach.com. I think you will find us already doing what you mention above for your patients! Let us connect you by TEXT, EMAIL or NATURAL VOICE!

    Have an amazing day! Marian in Charlotte, NC

  19. Right on all counts, Dr. Lamberts.

    You are not alone.

    Lybba, the nonprofit I run, is developing a concept that’s quite similar in nature. OPENHealth Central is a web- and mobile-enabled care-management system that 1) triggers care-provider action and 2) collects data that drives evidence-based improvement in patient care, population health, and healthcare costs. OPENHealth Central aims to help clinicians and patients plan for visits more effectively, track experiences between visits, boost the quality of care and self-care, and provide the psychological support that comes from a rich human feedback loop.

    With good fortune we’ll make progress toward our common objectives.

  20. We all need healthcare until the day we die. There is no line between sickness and health. It is simply what are the actions required to improve my health as a patient.

    The PCP role in this is to inform the patient of the current state of health, educate them on their health and offer actionable processes and the necessary clinical resources to improve health.

    Engagement goes both ways. Patients are required to engage with their provider as much as the care provider is required to engage with the patient.

    If Care Providers depend on their best efforts to keep and manage engagements, they will have some success, but not optimal success.

    If Care Providers learn what works and what doesn’t and apply the lessons learned, they will be able to improve, “Best Effort” to “Reliable”. This is a continuous process. It never ends.

    If Care Providers use information and analytics to deepen their knowledge and understanding and if they use “Predictive Analytics” for understanding and predicting patient behavior, they will be able to continuously improve and be able to advance “Reliable” to “Predictable”.

    Collecting information to drive this process is an issue. Care Providers have the knowledge and talent to help people. Data entry is not nor should it be there forte’.

    The EHR/EMR systems must be able to record and interpret all patient encounters. Encounters can be emails, faxes, phone calls, attendance at seminars and more … Any action directly related to a patient’s health can be used by a Care Provider to improve Patient outcomes.

    EHR/EMR systems can’t do this, until they do they will get in the way. There are three things required: A vision, time and money to make this happen. The goals of the EHR/EMR systems are mostly focused on wealth creation (which is important), which often conflicts with the goals of patient care (which is more important).

    Until the goals of wealth creation are always aligned with the goals of patient care there will be issues.

  21. Rob, you are a breath of fresh air! ‘Patient-centred care’ and ‘patient engagement’ are warm-fuzzy PR references, often leaving the patient, and their care, sorely lacking. Communication is key to better outcomes, and if the physicians in my daughter’s care had listened to us, had felt that our relationship with them was one of collaboration, they would have understood that we had the answer all along. It’s too late for our 17-year old daughter, Jess, but it’s not too late for all the other Jess’ walking their own unsafe journey through healthcare. Thank you, Rob, for offering up a little bit of common sense to a system that often forgets what is important; the patient.

    Please honour Jess by watching her story:


    Tanya Barnett

  22. Health care confronts the same problem that many other “people intensive” situations do. Success is highly depedent on the quality interactions of the people involved. In health care that is made all the more difficult by the imbalance of knowledge that typically exists between the people interacting. Deliverers of care (physicains, nurses, etc). have a knowledge advantage in medicine and the patient and or their family members have a knowledge advantage about their life circumstance and personal history.

    The typical approach of much of those who try to improve this process is to somehow “engineer” a specific way the two parties should interact to overcome this imbalance. Problem is that the relative imbalance and the particular needs of interaction between the parties is too unpredictable to to have a standardized solution that iseffective. We end up with generic solutions that often make things worse!

    Other people intensive industries have begun to employ a new approach – a more dynamic human interaction centric approach that is demonstrating success. This approach is often termed experience co-creation. The basic idea is that if we focus on how to enable stakeholders to work together in a way that co-creates mutual value – for the patient and for all care givers involved. Its not about patient engagement its about effective co-creation of interactions by all stakeholders together. It takes into account the personal experiences of the care delivers as well as the patients. Stakeholders – Engagment Platforms – Interations – Experience – Value is the chain that makes this link. Health care IT devices are ONE form of engagement platforms that support such engagement – but are not the ends in themselves – a point the author makes quite well.

    This co-creative appraoch may indeed be the “different approach than we are taking today”.

  23. I agree with you and believe that IT can fulfill some of the roles of communication in an important and meaningful way. I think Adam Bosworth was on the right track a couple years ago in his keynote at the 2009 TEPR conference. I would add that information in the record needs to be digitally signed by each source and alterations must be detectable and logged.

    From an information perspective, we have moved from silos of paper to silos of electronic records; sadly health information exchange is at a very primitive state, and further doesn’t begin to address the problem of conflicting information.

    As a patient, I want a comprehensive healthcare plan covering acute and chronic disease treatment, nutrition and diet, medication and supplements, exercise and physical restrictions. I want it to serve as a coordination for my several caregivers, reflecting our de-conflicted and coordinated care. I want it to record my progress toward the goals. I want it to reflect my values as well as my caregivers, particularly in the area of end of life care. I want it to be honest – mortality is inevitable, unknown is unknown, and poor choices are poor choices; only then can I learn and make better informed decisions. I want it to visualize and summarize my overall health and conditions so that understanding is conveyed rapidly. I want it to reconfigure information for the convenience of my care givers. I want it to be translatable to language I can understand and accept that I will have to learn in order to understand my conditions at a deeper level. I want just enough privacy – not so much that my care is compromised, or so little that I am subjected to unfair discrimination. I want to benefit from analysis of my data and am willing to share it in the interest of advancing our healthcare knowledge.

    Most or all of these requirements could be met by an information system, but it will require a different approach than we are taking today.

  24. Mighty Casey says “The shiny object here is money. Since the patient isn’t the direct payer – although it *is* our money – healthcare is dancing to the tune of those who dispense the cash. And the wheel just keeps on turning”

    But the for profit wheel is about to fall off-PREPARE!

  25. “Patient engagement” is a phrase that has been neutered through over- and misuse. The desired outcome is to activate the patient toward participating in his/her care and toward best possible health. “Engagement” in its current healthcare use makes me think it’s more about shiny object syndrome than anything else.

    This is the money shot:
    “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.”

    The shiny object here is money. Since the patient isn’t the direct payer – although it *is* our money – healthcare is dancing to the tune of those who dispense the cash. And the wheel just keeps on turning …

  26. Patient engagement or whatever word you want to use is key. I’ve spent the past decade working on programs to do this.

    As I was breaking it down for someone the other day, I laid out several “stages”:

    * Identifying what message to deliver to who (personalization, segmentation)
    * Creating a value exchange for the patient so that they will want to hear the message and see value in what you’re telling them or asking them to do
    * Determining how to deliver the message (ideally based on patient preferences or past behavior)
    * Cutting through the clutter of other messages since the average person receives 5,000 messages a day between e-mail, TV, radio
    * Timing your message so that it matters (patients aren’t always receptive to change)
    * Being clear (health literacy, plain language)
    * Providing an actionable path for the consumer to take action

    I could go on, but I think one challenge that most of us forget about in “patient engagement” is that the patient is often overwhelmed and has other issues. There goal isn’t to improve their A1c or reduce their cholesterol. Their goal is to play with their kids or see their grandkids get married.

    We need to think more like financial services companies and care about the whole patient not just about the disease.

    The question is then about how to use technology to support this. With all the Big Data discussions and algorithms out there, this should be very achieveable. But, it has eluded many people for a long time.

  27. Margalit —

    Thanks very much for that very thorough and informative response. It’s one of the best posts I’ve ever read about EHR’s and PHR’s from a patient perspective.

  28. 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….

  29. 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!

  30. 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.

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

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

  33. 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.

  34. 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.

  35. 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!

  36. 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.

  37. 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.

  38. 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…

  39. 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?

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

    So true. Excellent article! Thanks,


  41. 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….

  42. 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.

  43. 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…

  44. 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.

  45. 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.

  46. 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.

  47. 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.

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

  49. “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

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

  51. 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!

  52. 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?

  53. 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.

  54. 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.

  55. 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?