Do patients want to be empowered or managed?

by Toni Bigby

Lately there has been a lot of conversation around patient empowerment – an ambiguous term, but one that is fodder for many conversations across the health care industry. Patient empowerment – to put it simply – is about providing the necessary tools and information to a patient so that he or she can take a more active and involved position in his or her health care.

It seems common sense – people want to control their own destiny. But the debate is whether people really want to be empowered when it comes to their health care and what empowerment really means. Would people rather take direction and be ushered through the health care system or do they want to find their own information and formulate their own options for care?

The answers to these questions would have a profound impact on how health plans engage with their members.

They want to be empowered

If the answer is that patients want to be empowered, then you have to look at the kinds of tools and information being provided. You may consider introducing more online applications that let people manage their eating habits or exercise regime. You may introduce materials that help patients better engage with his or her doctor – like a “Top Ten Questions to Ask the Doc” brochure. Or perhaps you publish more information about formularies and how different drugs react with one another so the patient can be more acutely aware of how his or her body will react to certain prescriptions.

They want to be managed

If the answer is that people don’t want to take a proactive role in their health care, and instead would rather be managed through the system, then this introduces a whole other operational philosophy. If this is the answer, then you may want to hire more case workers and nurse-hotline employees.

A system of greater follow-up with patients would be a good element to introduce – like doctors or case managers calling a patient after a prescription is filled to make sure they understand the instructions of use. Materials could be introduced around when to see your doctor, and what tests or procedures are important based on life stage. A more concerted effort to getting patients in to see the doctor more regularly is another strategy that may result.

Health care reform thinks empowerment

It’s obvious through the health care laws that our leadership believes people want to be empowered. It’s why policies like covering some preventive care procedures or allowing a woman to see her OB/GYN without needing a pre-authorization from her PCP are now in place.

But the question is still a perplexing one that needs to be answered. So we are out in the field right now asking about this very thing. Do people want to be empowered to address their health care needs, or do people want the system to better manage how and when we access it?

Toni Bigby is Director, Consumer Advocacy at CareSource.

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  • IVF-MD

    The very question of the title reminds us of the problematic nature of treating healthcare (or any part of life for that matter) as “group-think” or a one-size-fits-all situation that is supposed to be best for everyone and that is to be decided by some distant political central planners who are not part of our lives. Instead, SOME PEOPLE want to be managed while OTHER PEOPLE want full control while still others want some combination of both. By allowing ourselves freedom over our decisions, our bodies and our money, we preserve our individual rights. However, when they speak in terms of their laws and policy and what they can do to control and manage our lives economically, physically and even morally, then rather than each of us getting a free choice, we are subject to the will of whoever wins more votes.

    I have patients who want to have input in what brand of medications they use and what day and hour their embryo transfer is and I try my best to accommodate them while making sure to advise them of the pros and cons from a medical standpoint. I have other patients who just tell me “Don’t stress me out with details. Just do what you judge is best in your professional skill. I trust you.” For those, I also try my best to accommodate their wishes. The best policy is not a one-size-fits-all policy but one that respects individual preferences. That’s just my opinion anyway.

    • Marcy

      I agree.

      For me, I prefer (and I guess you could say, demand) input in my care plans, options and prescriptions (when needed). Most of my friends however are automatons who simply go with whatever the doc recommends. Two styles, and likely similar outcomes – the difference is I pay fully my medical costs (high-deductible HSA) unless I were to have a catastrophic medical issue crop up.

      I have to add, before I CHOSE an HD-HSA, I pretty much didn’t care – doc said XYZ was needed, I said okay…..while I was paying the premiums, I didn’t fully appreciate that I was paying for whatever doc said through increasining premiums each year for that ‘do whatever’ attitude.

      Since switching to the HD-HSA, my line de jour is “how is that going to change management?” — interestingly, I’m often told results from XYZ won’t change manangement…and ya know what? If it won’t change management, I don’t go forward with it.

      Case in point – I’m 44, pregnant and at week 26….doc wants to start serial scanning each week. Yes, each week! I ask why? I’m told, well you’re “high risk” and that’s what we do…..I ask why? I’m told to catch something amiss early. I ask like what? And I am told a very vague reason, it’s really because I’m high risk and that’s what they do. So I ask why I am high risk and doc says because you’re 44 years old!

      Okay….so my BP is 110/60, my weight gain is well within normal, my previous pregnancy went without a hitch – delivering at 40-weeks, my FBG is 82 and my one-hour GTT is 96, the 20-week morphology scan showed a perfectly formed fetus, on week for growth, and my 11.5 week scan and bloods reduced my risk for various congenital issues from 1 in 33 to 1 in 986, subsequent scans have continued to reduce that risk even further – and I’m high risk only for age?

      What gives?

      Serial scanning now, at $397 a pop, will be almost $6,000 before delivery….ummm, does scanning that often change management?

      Doc says, I kid you not – you have insurance! Yes, Doc I do, however, regardless, I do not see how spending $6.000 between now and delivery is going to change things… about we continue along on the ‘normal’ pregnancy schedule and if/when something crops up, we can re-evaluate?

      He did agree… instead I’m remaining on the monthly scan schedule (which is an option for high risk for those under 38) until week 34…..we’ll evaluate then and make a decision at that point if more scanning is necessary or not. I also said I’d do another GTT if he’d like at week 30 or 32 just to be sure I’m not developing GD since that is a risk I feel could crop up given my age.

      How many out there, with “comprehensive” plans would even think to question the above? How many would actually calculate out the cost and benefit/risk?

      I’d hazard a guess the answer is NONE.

      HD-HSA’s put the patient in a much better position, IMO, to evaluate the cost-benefit than some noob off in Washington.

  • Beth Austin

    Great post, Toni. I was having this same conversation with a colleague just yesterday. I believe the challenge is that there isn’t a “one-size-fits-all” solution. Most would likely rather be empowered, but there will always be some that would prefer to be managed. Within both groups there will be differences in literacy levels, demographics, psychographics, etc. that will require varied approaches. There are real challenges in the current environment to identifying a patient’s preferences and matching him/her with the right tools.

  • Heather Johnson/ Nurtured Moms

    I think it depends on the person, honestly. Some people want to be empowered, but others want to be managed. Then there are the people who *say* they want to be empowered, but really want to be managed. And the people accept management, and get angry after the fact that they weren’t empowered.

  • Ryan

    It all depends on the person. Speaking as a patient, there are times I like to feel empowered like access to my chart history online when I’m feeling well and other times I want to be manged, like when I just don’t have the energy to focus on anything but getting better.

  • Davis Liu, MD

    Certainly, there will be many patients who want to be empowered and that is fine. My suspicious is that a majority of Americans don’t want to be empowered. They want a system that is patient-centered, easy to navigate, and provides care when they want it and when they need it. This is not the case of our current healthcare system.

  • Dr. J

    It depends on the situation as well as the patient. I think we are all happy to have well educated patients who can weigh risks and benefits and make good, personal and informed choices. That’s not always possible though, an in critical and time sensitive situations patients still rely on doctors to make critical and educated decisions to save their life.

    When a patient with a big myocardial infarction rolls through the door, clutching their chest and feeling like they’re going to die, they don’t want to debate the merits of various GIIBIIIA inhibitors or and which they will choose, they don’t want me to spend a half hour educating them about the various facets of managing acute coronary syndrome; they want me to manage the situation efficiently and effectively and get them to the cath lab.
    To be honest I don’t even think you can truly get informed consent from these people (more like assent) never mind have them become empowered about their time sensitive and life threatening condition.
    My 2 cents..

    • Hexanchus

      “they want me to manage the situation efficiently and effectively and get them to the cath lab.”

      Some, even most might, but some may not – if they are conscious you still need to ask.

      As recent studies have shown, many CA blockages can be just as effectively treated with medication as opposed to cardiac cath, with less overall risk to the patient. You need to at least briefly discuss the treatment options with either the patient or their PR. If they say “do what you think is best”, great! On the other hand, if they want more information in order to make their own decision, that’s their right.

      • Dr. J

        The point was that critically ill people don’t seem to want to become empowered in their moments of extremis, rather they want someone to efficiently manage the problem. I had used a patient with an MI as an example of this not as the example of this.
        I certainly understand your point as being the correct answer, and it’s exactly what I would say if I had to write an exam on the subject. That being said I see this situation daily in my emergency department and I simply do not run across many (?any) critically ill patients who want anything except to meet me, hear that I am going to do my best to help them and get to work.
        If patients want something else that’s great, I’m a libertarian, I support their right to make their own decisions. My point is that the reality of what I see on the ground tells me that the huge majority of near death patients don’t want anything except a confident “I will work my hardest for you” and a brief explanation of what will happen.

  • Jason Dapore DO

    The answer to the question is…Yes! The very nature of medicine is dynamic with ever-changing contexts. Our patients will choose to be either managed or empowered in different contexts. Our systems should be supportive of either choice. We all have very different individual preferences that should be respected and supported.

  • Diana Lee

    Pretty much depends entirely on your personality, needs and circumstances, I think. One size doesn’t fit all.

  • minutemoon

    You can’t look at this as an either/or question. And you can’t design a philosophy or an institution around this as an either or situation. Some people may want to be “managed” in some areas and “empowered” in others. Also, it depends upon how you define these terms. If “empowered” means taking the necessary responsibility for one’s health, that should be an expectation. If “managed” means giving up personal responsibility, that should be discouraged. People are different and the whole empowerment/management issue needs to be part of their treatment plan.

  • Heloise Avenant

    I share the consensus that it is both. Medicine will have to learn from treasury in the sense that we need to provide people with the infrastructure within which they can “self-manage” (tax deadlines, etc). We have to start looking at healthcare as “maintenance” i.e. preventive (with the patient the driver) and “acute care” for the unforeseen (with the physician the directive). Human nature dictates that people will defer appropriate pro-active actions in favor of things that give immediate gratification to the detriment of the long term outcome. That is the only way we will impact on the prevalence of the acute care events that drive our health care costs.

  • Frances D.

    Speaking as a patient, I want to be an empowered patient
    so in that regard I research my health condition as much
    as possible on WebMD and other websites before I see
    my doctor. Then I write down a few important questions to
    ask my doctor the next time I have an office visit with him.
    I want to have ownership of my health condition at all times.
    I trust my doctor to make decisions about my health and offer me treatment options but I also want my doctor to see me as an individual and not assume that all of his patients
    are the same. Just because we have similar health problems it doesn’t mean we should receive the same
    kind of treatment. We all react to medications differently.

  • Trisha Torrey

    1. The first obvious answer is what others have already posed; that is – there is no one-size-fits-all solution.

    2. Less obvious, but just as important is that sometimes even the same patient wouldn’t have the same answer. I will react, and have different needs, when I am initially diagnosed with a skin rash than I will when initially diagnosed with cancer. Over time, and depending on progression, I may then shift to empowered, shared decision-making, because the initial shock will pass, and I’ll be more capable of doing so.

    Even the way you phrase the question, Toni — as if empowerment is something you GIVE? It’s one more example of the paternalistic approach to healthcare: that healthcare is something that is done TO or FOR or AT patients.

    In fact, healthcare should be delivered WITH patients — based on the patient’s preferences, capabilities, or current needs. Shared responsibility, with the recognition that not all patients are able to handle empowerment at any given moment, either emotionally or intellectually.

    “Empowered” and “patient-centered” shouldn’t be mutually exclusive. In fact, the very definition of patient-centered means you meet the patient where he or she is, according to his or her preferences, over time.

    Yes, I realize that makes a delivery model difficult. If one-size-doesn’t-fit-all — then providers and plans, to be successful in the long-term will have to accommodate different patient approaches.

    Hmmm… seems like that may be the biggest difference between a single payer system and a private, for-profit system. I think it’s called customer service.