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What do Patients Really Want? Part II

January 23, 2012

Today I’m following up to my last post, exploring the question of how and where the consumer perspective fits in the development of connected health.  Recently, I read with great interest a piece in JAMA called “What Patients Really Want From Health Care” by Allan Detsky.  It is a well-written and provocative piece. I don’t know Dr. Detsky but one gets the sense he must be a fine physician, in the tradition of Marcus Welby or the type of doctor I grew up with in Barre, Vermont, who would make house calls and always seemed to know how to make you feel better.

While interesting reading, to me, the piece seems flawed from two perspectives.  First, the article is highly focused on an acute care view.  Dr. Detsky notes that he practices in an inpatient setting and the piece reflects this bias.  Secondly, it is truly difficult to really know what patients want when you are in the role of the doctor.  I can fully say that when I take on the role of patient, I can’t really do so in a pure way, completely divorcing myself from my role as a doctor. I don’t think its possible for a physician to fully embrace the role of patient, possessing the insights into health and disease that years of clinician training and medical practice.  So, despite his best efforts, I don’t think that Dr. Detsky can tell us what patients really want.

It’s not that I think the JAMA article is off-point but rather incomplete.  There is so much more to health care than what goes on in the acute-care/inpatient setting. When we are sick enough to need an inpatient bed, most of us want to be cared for in the most profound way.  This perspective on care doesn’t translate well to the two other domains of health care that I routinely think about – namely health/wellness and chronic illness.

Focusing on health/wellness and chronic illness, I’m going to risk falling into the same trap I’ve criticized Dr. Detsky for: I’m going to take a stab at what I think patients want. However, using the blog format for this communication allows me to take advantage of social media allowing for feedback, especially from those of you who are not doctors!  So, please help me with this.  If we hit a home run, the output from this dialogue will be fodder for our Symposium and for other writing projects I’m involved with.

In the realm of fitness and wellness, I believe:

  • We want to live forever in a healthy, painless state.
  • We want our health care professionals to take us seriously when we engage them in dialogue around alternative approaches to diet, exercise, nutrition, sleep and longevity.
  • We want integration of our fitness/wellness world into our healthcare world. Right now they are silos that don’t talk to each other.
  • We want to engage our healthcare professionals in conversations around all of the data we’re collecting about ourselves with consumer-level devices (and not have those data dismissed as unimportant).

In the realm of chronic illness:

  • We want low-friction solutions to help us cope.
  • We don’t want to be told we’re sick and we don’t want to be treated as sick.
  • We don’t want to face the future consequences of our chronic (often symptomless) illnesses.
  • We want to feel as if we can dig ourselves out of the chronic illness abyss – to feel hopeful.

In general:

  • We want good service.  A person to answer the phone.  A kind voice.  A caring and supportive person.
  • We want to be treated with respect.
  • We don’t want to spend time in the doctor’s office or hospital.
  • We want simple, consumer-friendly processes for accomplishing tasks like scheduling an appointment or refilling a prescription.
  • We want access to professional advice (Dr. Detsky and I align on this one).
  • We want transparency of process – ‘a play book on how to get things done.’
  • We want a way to take charge of coordinating our care without complex, repetitive and obtuse processes.

For centuries, patients have put up with tremendous inconvenience and friction to move themselves through the healthcare system.  They’ve put up with it because the only way to get care is to visit the doctor and the system is constructed to make the doctor’s work life as productive as possible, not to make it easy for patients.  I expect that to change in the coming years.  We’ll see more patient empowerment,  more instances where consumers can make their own health care decisions without  a physician and more opportunities to streamline care delivery making it simpler and more patient-friendly.

What do you think?  Did I get it right? What’s missing? Let me know.

65 Comments leave one →
  1. permalink
    January 23, 2012 1:17 pm

    What do Patients Want? Great Question. I wonder if there are any places or systems patients are full partners in designing their health care or where its “Members” already have a system that is desinged around their needs? Ah ha there is!

    It sounds like you are writing about some future state vs exploring what we currently have in some systems like Group Health and the missing secret ingredient is simply payment reform. Group Health is a “co-op” started in 1947 that has over 600,000 “members’ not patients and not consumer but people who own their health care system that is be default patient centered.

    What does this look like in practice? An EMR that was rolled out with a patient portal from the beginning of go-live, 24/7 access to your clinical records as well as your care team, a mobile app that gives you nearly real time access to both labs and radiology results and lets you make appts on the fly. . New clinics that are being designed without waiting rooms because they take the members workflow into consideration and of course all of the primary care clinics across the state have shifted to the medical home model

    What about wellness? Not only do members have access to cutting edge research into wellness and of course fill out a health profile but GHC provides an online wellness application – Limeade for all of its employees. The same app being used by REI for its employees. GHC also sponsors one of the largest bike events (Seattle to Porltand) each year. et.

    Perhaps their biggest challenge remains branding since some people consider large systems to be impersonal (aka the public health model) but their clinics look more like medical spas now.

    This all sounds great but what about cost and outcomes? GHC was the only health care insurance (they are an integrated system) that kept their rates for medicare flat last year and they consistently rank in the top tier of quality metrics (according to the PSHA community checkup).

    FYI – I don’t even work for them.but did during their EHR implementation and serve on multiple committess (PHSA) and boards (HIMSS- WA)) with people who currently do.

    So the only thing you missed was the business case that drives patient centered design

  2. January 23, 2012 3:02 pm

    thanks so much for this perspective. I don’t have personal experience with GHC, but everything you say I’ve heard from others. However, they may be unique or unusual. We need to encourage others to emulate.

  3. January 23, 2012 5:17 pm

    In 2010, we went through a large exercise at the Washington Health Foundation to develop a set of design principles you could use to create a truly person-centered health system. That work led us to focus on a number of key issues identified in your list of the things patients want. One of the big ones for us (name because we believe that context and semantics have a powerful – if often invisible – influence) is that individuals (especially in non-acute care settings) ultimately want to be treated as people – not as patients. Many of the statements in your list reflect this need to be treated as people… perhaps with the slight exception of transparency (which is quite different from making something understandable and indicates a traditional power dynamic that the rest of your post pushes against).

    Here’s the list of principles we came up with an a short post about our process and the event that resulted from the project:

    -Embeds feedback loops that empower people to interact with the system as partners and individuals, not just patients (Feedback)

    -Requires shared responsibility to select among a bounded set of trustworthy options, so that people’s outcomes and experiences meet their expectations (Affordance/Constraints)

    -Allows people to easily understand the relationship between parts of the health system and the value that they are seeking from it (Mapping)

    -Connects people and provides them with the tools to relate to others openly and freely, in ways that build from their communication needs (Networked)

    -Re-shapes diverse knowledge into frameworks that people can use to improve their health and make sound personal health care decisions (Enhancement)

    -Responds to the changing demands and health needs of people by providing flexible services that can adapt to emerging trends (Accessibility)

  4. January 23, 2012 7:57 pm

    thanks so much for your thoughtful input. i must now digest it!

  5. January 25, 2012 12:27 pm

    We at PwC recently completed a global CEO survey that looked at the key issues and concerns facing CEOs in many industries. It was interesting to see that when compared to all other industries, healthcare CEOs saw LEAST need to change their business models or decrease their costs.

    There is not research that suggests that our hospital-centric healthcare system is a good way, let alone the best way, to manage chronic disease. Chronic disease consumes 75% of all healthcare dollars in nearly every country, yet we focus on building more hospitals to admit more patients rather creating a system to considers success keeping them OUT of the hospital.

    Until success is measured and paid for in keeping people in their homes rather than in the hospital we will never become focused on dealing with the healthcare problems most people have and the vast majority of our costs. We are operating under the rules of insanity. We keep doing the same hospital-centric things and yet expect a different outcome that will decrease costs and improve outcomes.

    How do we stop the insanity?

    • January 25, 2012 10:02 pm

      Thanks for your comments, Chris. its an honor to have you as a reader!

    • February 8, 2012 6:28 pm

      A friend forwarded me this blog post as I’ve been part of team, we call Forever Athletes, focusing energy to build something where we can all benefit from the experiences of those who have been successful. Yes, we’re certainly not the first to emulate the learning approaching of modeling after successful examples, but is it a popular method to empower active, healthy living?? I suppose the jury is still out. But what we do know is that there are a plenty of tools for tracking exercise, nutrition, sleep, etc. If more people aren’t motivated to use them, what good are they??

      After the last 1.5 years of filming interviews with various adults who regularly participate in some type of sport or physical activity, very quickly, common themes rose to the top. We interpreted the themes as “lessons” that the general population could implement to become more healthy. And so, we started created videos to share the stories of the people we’ve interviewed, but in a way that hopefully “teaches” the lessons through actual application. Videos samples here:

      The thought is, if we can get the support of doctors to “prescribe” a series of videos to their patients, based on the patients’ needs, and have a means for following up with that patient, there may be a good chance of real behavior change. Using these videos as a primary “treatment”, we would hope to put the patient back at the center of the treatment and provide hope for real change, where change is needed.

      Any thoughts on this??

  6. January 25, 2012 12:33 pm

    I am a health science librarian at an academic health center and also a patient at a number of different systems in the Boston Metro area. I was recently inpatient at one of the large systems in Boston. Having a patient portal to get copies of tests, send messages to my physician saves a lot of time for me, and the physician.The system where my PCP practices does not have a portal. To get copies of tests I need to call the office, have them print the results, and then stop in the office and get the results. (They could mail the results.) The bottom line is, with a patient portal I can get the background information without contacting the doctor, and contact the doctor when I need to. Without the portal, it increases the time required at the doctor’s office. The portal reduces costs for the physician’s office.

  7. January 25, 2012 12:46 pm

    Enjoyed the original post and the follow-ups. The healthcare payors are patients, caregivers, employers and CMS (taxpayers). Payments and insurance as managed until now are not aligned with payors needs. Pay per uncoordinated procedure is well documented as an unnecessary burden. Another area: Consider that insurers paperwork churn is part of cost. Rates are based on cost plus profit. In my opinion, this is another key disconnect.
    Will ACOs solve these problems? Maybe…. But, not if healthcare CEOs resist change. Not if institutions resist the adoption of telehealth and wellness programs. Not if politicians guided by interests in the existing systems torpedo efforts to change.
    An addition to the original: Patients and payors want to reduce healthcare paperwork churn and cost.

    • January 25, 2012 10:01 pm

      indeed its a complicated industry, unnecessarily so. I hope some smart person figures out how to successfully simplify it.

      • January 26, 2012 8:09 am

        Adoption of technology will take a concerted effort by many. Hope several associations can co-operate. Is CCH following the legislation in Energy and Commerce related to FDA approval of innovative technology, and promoting adoption of technology in healthcare? Timing seems pretty good because FDA re-authorization every 4 years. Hearings begin next month. Have suggested American Telemedicine Assn. comment. Thanks.

  8. January 25, 2012 1:02 pm

    Great post. Perhaps the simplest way for physicians to answer this question is to ask the patient. I don’t intend my response to be flippant…it’s just that we patients are seldom asked.

    Here are some additions I would make to your list from a patient’s perspective:

    – Trust – we want to know that you are acting in our best interest and not the interests of a hospital, health plan, or big pharma – We want you to learn how to run your practices in a more productive fashion in order that you have the time to talk with us.

    – We want you to demonstrate a little empathy now and again when appropriate- We want you to do a better job providing the recommended preventive services – if we are only receiving 50% of recommended preventive services…please tell me which 50% you are not giving me.

    – Please stop telling me you don’t have time or are not reimbursed enough to talk to me – it kinda cheapens the advice you do give

    – Ask me my beliefs and opinions about my health before you callously tell me to do something that runs counter to my beliefs..can you say intentional non-adherence

    – Invite me to get involved in the visit by asking questions even though you may not really mean it

    I think you get the idea. I research and write extensively about the challenges associated with physician-patient communication – an area often taken for granted by clinicians and patients.

    Steve Wilkins, MPH

  9. Ann Rosas permalink
    January 25, 2012 1:10 pm

    Great post and responses! I think healthcare needs to be more flexible in how and where care is provided, to be the most responsive to patient needs. Patient portals are great and should be available in all practices. Home monitoring should be encouraged and data collected and reviewed by docs to better see health trends in patients. Patients need to be respected as the owner of their health and as the expert on their own health/illness experience. If the healthcare system has options, other than just the traditional doctor visit, for patient/doctor interaction, more of us may engage in health and wellbeing.

  10. January 25, 2012 1:11 pm

    People want not just to thrive, not just survive. This is not solely the province of the healthcare system, although we’d agree that it has a major role in supporting individuals toward realizing this vision of their lives, even if they struggle with chronic illness.

    My company is taking is thus focusing on seniors not just as patients but as individuals who have a hierarchy of needs (keying off a 2006 paper that came out of MIT’s AgeLab near you in Boston). Health needs are part of the foundational tier, but so are other services ranging from transportation to Meals on Wheels. So we use social networking and social commerce to strengthen their connection to local care coordination and in turn to local medical and non-medical service providers. We then try to help people move up the ziggurat of needs by linking them to local activities — ranging from the garden club to volunteer and employment opportunities — and other seniors in their communities. Turns out that people over 50 link them to their communities (care coordination, medical and non-medical service providers, local activities ranging from the garden club to volunteer opportunities) and other seniors. Turns out that sites like have been focusing on the 50+ demographic in part because those young whippersnappers have been moving to Facebook. Of course, older folks are also following them, with Facebook membership among folks over 55 skyrocketing by 1,400 percent between 2009 and 2010.

    This is not an ad for my company — but we’ve talked to a couple of healthcare organizations, including a large hospital-based pioneer ACO — that think our platform could have a role in what they’re doing. We’re trying to treat patients as consumers, and not in the sense that they want to go shopping (a la consumer-directed healthcare per se) but in terms of engagement.

    • January 25, 2012 9:58 pm

      Dear Suneel: I so much appreciate you taking the time to make my blog a better place to visit by adding your experience and wisdom.

  11. stayhealthy permalink
    January 25, 2012 1:11 pm

    Having gone through the medical system quite intensively a few years ago, here is what I find most frustrating about patient care: in my experience, most doctors treat patients like the blind men and the elephant. (“It’s a tree trunk! no, no, it’s a hose! no, no, it’s a dagger….” ) First and foremost, I want to be treated as a WHOLE patient, not as a brain, or kidney, or stomach, or thyroid, or uterus, or malignancy, shuttled off to various specialists who seem to forget that I am a whole person. I think the dependence on specialists has certainly helped in expanding treatment options for many diseases, but at the expense of ignoring systemic interaction and overall, wholistic patient health and well-being. My experience is that specialists have a tendency to “medicalize” and treat any symptom that’s on their respective checklist immediately and minimize or ignore anything that isn’t, whereas a generalist is more likely to adopt a risk/benefit, wholistic approach. As a patient, I also hate to be treated as a statistic. It is fine to quote me the prognosis stats and the risks of various treatment options, but from my INDIVIDUAL perspective, my response to and side effects from treatment is usually either 0% or 100%. It’s only when grouped with a lot of other patients that the statistics become relevant; most doctors I’ve dealt with don’t seem to appreciate the individual perspective of a patient. My best treatment has come from doctors who have had their own health issues that have forced them to go through the same system that I go through. I know some medical schools are adopting requirements for students to spend time as patients in the system, and I think this is great and should also be a regular part of continuing education for physicians. Perhaps have docs shadow one of their patients through the system for one week every five years. Just a suggestion. And let’s not even start on the Byzantine record keeping and lack of coordination among various arms of the system that is infinitely frustrating and can really detract from a patient’s focus on getting well.

    • January 25, 2012 9:57 pm

      thanks so much for taking the time to bring your perspective forward. I agree completely

  12. January 25, 2012 1:12 pm

    Rather, people want to thrive, not just survive!

  13. January 25, 2012 1:21 pm

    At the risk of sounding repetitive on my comment to Part I, I think that your article above misses one very important piece of the healthcare demography, which is the older patient nearing the end of life. So much of what healthcare technology innovation focuses on today involves people that are not older, retired individuals. I’ll use my mother as an example. She just turned 65, and she has been suffering with MS for over 30 years. She is currently receiving treatment from what I would consider to be one of the top hospitals in the nation, and of course they have a patient portal. Does my mother use it from time to time to ask for prescription renewals? Yes. Does she use it to communicate with her doctors? No, she asks me to communicate with them because it confuses her. Has she ever once looked at the results of lab tests and MRIs that are available on the patient portal? No – again, it confuses her. Does she use it to make appointments? No, she makes those in person when she’s in the doctor’s office or clinic receiving an infusion. Could she live without a patient portal? Absolutely.

    All of this to say that “insiders” in healthcare innovations seem to singularly focus on (and talk incessantly about) all of the wonderful things that will result from increased patient data that can be aggregated and shared among physicians and healthcare systems and pharmaceutical companies. I have no doubt that what they are saying is true, but the question is, do patients really want this? I would say they don’t care, because they don’t understand any of it. To them, it is a medical/healthcare system problem that confuses them instead of bringing clarity to their daily lives. When someone comes up with a solution that is understandable and simple, they’ll adopt it.

    Which brings me back to my original comment on your Part I. What do patients really want? I agree with what you say in Part II (with the exception of your last bullet point under “fitness and wellness,” for the reasons discussed above – most people aren’t collecting that data on themselves and don’t care), but you’re missing the last chapter of life in your analysis (so, similar to your comment on Dr. Detsky’s article, your article isn’t off-point, it’s just incomplete). At the end of life, patients almost always want the same thing (which was discussed at length in the two articles I cited for you): (1) they don’t want to suffer or be in pain, (2) they don’t want to prolong the dying process, and (3) they want to be with family and have a sense of control.

    Studies show that approximately 2.5 million people die in the United States each year, and of those, approximately 2.1 million are over the age of 65 and Medicare recipients. Other studies show that, if asked, approximately 75 to 98% of those 2.1 million people would tell doctors that they don’t want extraordinary measures used to keep them alive – to prolong the dying process – and they would like to die at home surrounded by their friends and family. As I’ve stated previously, we KNOW what those patients want, because they’ve told us. The real question is, what are healthcare “innovators” doing to give those patients what they want?

    Thanks again for your articles, which really are very good. I look forward to your thoughts!

    • January 25, 2012 9:56 pm

      End of life is a special case. Critical, I agree, and worth lots of thought. Your passion shows through. Thanks for making healthcare better!

  14. January 25, 2012 1:31 pm

    Joe, thanks so much for laying out this vision. I think you are pretty much right on, except that you are missing an important element. Consumers, i.e., patients, want information that tells them which physicians or hospitals do the best job of guiding them through the system, coordinating care, and achieving optimal results. We know that there is huge variation in these variables when comparing providers, but most of the data are locked up in clinical registries and EHRs that are inaccessible to anyone other than the providers themselves. So, I would like to add to your list of what patients really want information about alternative treatments and providers that would help them to make better choices. I know that some will say that no one other than a very sophisticated subset of the population is asking for this today, but that is because the general public is largely ignorant about the amount of variation in care and what it might mean for their health and well-being.

    • January 25, 2012 9:55 pm

      great add. thanks for taking the time to educate me on it!

  15. January 25, 2012 1:42 pm

    What to people want? We want to move our care along to the next step, and/or to know we are on the right path to achieving our goals.

    As a family physician, I have enjoyed use of secure email communication with my patients for over 10 years. It’s been a great channel to stay in touch with my patients. We have found it a great patient and provider satisfier.

    The issue in care is what information do we need to make a decision? Is it history, exam, lab/imaging studies? 90% of clinical decisions are based on history, much of which can be obtained via email. It’s particularly great for quick questions, status updates, and ‘do I need to see you’ questions.

    I’ve kept many a COPDer/CHFer out of the hospital with email.

    Through email, I’ve identified reasons for testing, that eliminated a visit with me, but directed patients promptly to specialist care. And, have brought people into the office earlier to see me, getting started on reassurance or treatment earlier.

    When we were considering an interruption of email service in anticipation of an electronic medical record conversion, our patients and clinicians said a resounding , “NO WAY!”

    Getting people the right care, the right person, at the right time to help them achieve their goals, requires multiple channels of communication: phone and email are great enhancements to what can happen in the office.

    Email is a great channel for key information to care givers, helping to move care to the next step.

    Paulanne Balch, MD
    Family Practice
    Kaiser Permanente

    • January 25, 2012 9:54 pm

      Kaiser is clearly ahead of the curve, but the rest of us are catching up! thanks for your insights.

  16. Mark D. Stewart permalink
    January 25, 2012 3:13 pm

    In General
    * We always want two options and we always want NO to be one of them

    • January 25, 2012 9:49 pm

      Haiku-like and powerful! You should be teaching risk management to physicians!

  17. lkafle permalink
    January 25, 2012 11:15 pm


  18. lkafle permalink
    January 26, 2012 2:44 am

    Reblogged this on lava kafle kathmandu nepal and commented:
    patients needs

  19. Tom M permalink
    January 26, 2012 8:38 am

    Although I am not a physician, I work in healthcare technology. I think the list above is great and reflects a lot of what I want. But the list is still a bit biased from my point of view since I spend my days thinking about how technology can improve healthcare. I think a key question is what do people, who do not work in healthcare in any manner, want?

    I recently had a conversation with friends (who do not work in healthcare at all) about why Google Health failed and why people didn’t use what seemed like a good idea. When I try and think about what I would want as a patient and speaking as someone who is not a physician. I want incentives. In general we don’t think about health, until we’re sick. But there is so much benefit to preventive care (i.e. staying out of the hospital, losing weight, healthy diet), but still relatively little incentive to live healthy or maintain our health. I think there is still a huge need for incentives to bridge the gap between our everyday lives when we do not think about our health and when we’re sick and all of the sudden health our greatest concern.

    As we blog about this today I am a healthy man who has taken measures to improve my health through diet, I can show through lab tests how my cholesterol has improved as an example. but I receive no benefit (for example a lowered premium) compared to someone who has gained 20 lbs. and who has developed high blood pressure. This is one common viewpoint I hear from friends and family.

    Technology can improve healthcare. But there is still a point that technology’s impact on healthcare is limited by the very model it’s trying to improve. It’s a big picture issue but if providers, payers, and most importantly patients can create incentives that say, to everyday people who have a million other things on their mind that, if you take some time occasionally to think about your health and improve it you’ll receive benefits for doing so. If every year I could show my insurer that my health has improved or maintained and I received a small decrease in my premium I’d be a lot more incentivized to use a Personal Health Record.

  20. January 26, 2012 2:40 pm

    Incentives are indeed a big part of success.

  21. January 27, 2012 6:42 am

    Great post and I think that you have got it right here. My big question is do people want to avoid being patients? Are they looking for ways to enhance their well being, thereby avoiding being patients in the first place.

  22. January 27, 2012 7:26 am

    This is a great question. On the surface, obviously, yes. Who wants to be sick? But when presented with long-term consequences of the risk of poor health, people still choose near-term behaviors that are unhealthy.

  23. January 27, 2012 3:02 pm

    I think everyone wants to avoid complications and to be as healthy as possible

  24. January 27, 2012 3:31 pm

    We at NXThealth are planning the Patient Room 20//20 and its mission is patient empowerment. We feel also the patient will be the one being in charge of this care process and are striving to have the tools available for that to happen. It is a challenge indeed but stay tune to our progress! Tom Jennings, NXThealth.

  25. Oyelayo Adekanye permalink
    January 28, 2012 12:27 pm

    wonderful article and great participants. Such a privilege to have been here, thanks.

  26. Michael D. Abramoff permalink
    January 28, 2012 5:36 pm

    Thought-provoking post. Clearly written from a perspective where ‘someone else’ but not the individual patient pays for their care.

    I also want the best *car* that will drive without problems for my entire life – if someone else pays.

    If I pay myself, any patient will always look at cost – vs – preference.

    Healthcare need is unlimited if cost is not a factor for the patient, assuming we are discussing routine care, not catastrophic care.

    It should be at the top of your list.

    • January 29, 2012 9:28 pm

      thank you. you are right. the post was written from the perspective of our current system. the thought was that people still want the same things. in an environment where they are responsible for payment, they may make more choices sacrificing what they want, but their wants should not change.

      • January 31, 2012 6:51 pm

        Is there any data for the last claim? Wants do change, IMO, when there are unlimited choices.

        Think of an eatery’s buffet line: the order in which items appear, their actual appearance and the size of your plate all influence your choices.

        Health care (on an outpatient, wellness-basis especially) can resemble that buffet: with many test and treatments possible, once they become known, patients and clinicians both “want” more of them.

        As I suggest below, our current system does in fact include people who are responsible for payment: about 12% of my hospital’s current revenue comes from self-paying patients. I think that number will increase going forward.

  27. James A. Dunlap permalink
    January 29, 2012 11:32 am

    Earlier ChrisWasden commented,”Chronic Disease consumes 75% of all health care dollars in nearly every country.” This is from my perspective as a patient with chronic kidney disease. Chronic diseases are for the most part incurable, they can only be managed and who has to be the primary manager? The patient of course!! My nephrologist can tell me what I need to do but unless I control my blood pressure, weight, exercise regularly and restrict my sodium and protein intake(in other words eat a proper diet) my creatinine will gradually increase until I reach the point of kidney failure and go on dialysis or die.(I will opt for the latter because in my opinion dialysis is “living death”). For three years I have maintained a level creatinine rate and protected my remaining kidney function at 30%. during those three years I have periodically charted my blood pressure, pulse, weight, O2 and submitted that information to my nephrologist who does not have
    EMR and does not use Email. I have talked to him on the phone on two occasions in three years! The point is that while I appreciate his competence and guidance, I am the one that is doing the managing of my chronic condition not him! This is true for most chronic condition patients. The doctor needs to remain connected with the patient. It is just not good enough to prescribe treatment and to not see or hear from the patient for “two months”. In the interim the doctor has no clue as to what or how the patient is doing and absolutely zero control over the patient’s adherrence to the prescribed medication schedule or what if any side effects might have been encountered, the patient’s weight, blood pressure, pulse, temp, respiration rate, O2, sleep quality, diet that is being consumed, pain, etc. Only the patient has management responsibility for their vital signs, reporting side effects, how they feel and doing the things they need to do to manage their chronic disease(s). Obviously there needs to be way for the patient to communicate with the physician whether it is via a patient portal to the EMR or Email. That ongoing communication can permit the physician to intervene, if necessary, and may prevent heart attacks, strokes, and hospitalizations for asthmatic attacks.

    The people at Stanford University developed a six week Chronic Disease Self Management course which instructs on how to cope with chronic disease, how to communicate with their doctors and to follow their instructions and to do all of the right things in managing a chronic condition. Every person with chronic disease could benefit from taking this FREE course but here we haven’t been able to even get the doctors to endorse this program!! They are apparently fearful that somehow this is encroaching on their medical practice to help patients self-manage their chronic conditions even though that is what they have to do anyway and the more help they can get they better are the outcomes for the patients and the doctors.

  28. January 29, 2012 9:30 pm

    Good luck with your struggle. Great to know about the Stanford course. thanks for passing it on.

  29. January 31, 2012 6:01 pm

    I think one area which concerns both wellness clients and chronic illness clients is cost: neither wants to know or pay the actual cost (however it is calculated) of care, and both groups want to know price of services, and want clinicians and providers to be transparent in putting it forth.

    Both groups of clients are currently insulated from cost and price. The only clients who see it are those who go to retail clinics (coming soon to Walmart, already in place at Walgreen’s, and many others); to clinicians with retail practices (many plastic surgeons, dermatologists, some allergists and bariatric surgeons); and to some alternative practitioners.

    My own patients call my office with the question of cost more often than nearly all others, because they expect that insurance hasn’t caught up to the one-on-one, time-intensive approach we take.

    And my own experience in trying to find out the price of a screening colonscopy was really revealing: it was very hard to discover, because I had to comparison shop without a guide; trace bills and potential bills from more than one provider (lab, provider, surgicenter); and more. There’s a business here!

    • January 31, 2012 6:12 pm

      I think Intuit was trying to do that — Quicken Health? That was supposed to empower people to manage their health care finances in much the same way Quicken and Turbotax empowered us with your general finances. What kind of physician are you? If you’re in internal medicine, is there some kind of delimited menu of services that you would offer to a preponderance of your patients, with prices laid out in menu-like fashion?

      • January 31, 2012 7:20 pm

        I’m an internist, and specialize in nutrition ( and weight management.
        Quicken Health is selling the admin/CMS back-end to physicians, to replace or complement current office processes but it doesn’t solve (or try to solve) the problem I indicated.
        Yes, I think an internist could offer a menu of services, and that would help a lot for those who need the transparency of pricing–either those with self-pay, or with high co-pays (our hospital’s insurance plan just raised their co-pay to $50 for an office visit), or those who are just curious.
        Urgent care centers also do this, from time to time, but retail clinics (and retail clinics onsite for employers) are offering a high-value proposition: see this MIT analysis of CVS’ MinuteClinic vs. the Cleveland Clinic:

  30. January 31, 2012 7:23 pm

    1thanks for the added rich dialogue

  31. January 31, 2012 11:35 pm

    I practiced in a rural town in South Dakota for 15 yrs. The farmers there are self-pay or high-high deductible. So to answer the question, what did the consumers want? Answer: to get out of pain. They often sacrificed their long-term health in order to get the cheapest way out of pain today. They avoided diagnostic tests in favor of playing the odds of a disease.

    Sometimes, I think a national healthcare plan, even a bad one, would be better than what we have now. 50 million uninsured people letting their wallet decide their treatment plan is not healthcare; that’s disease mitigation.

    • Ann Rosas permalink
      February 1, 2012 8:41 am

      Dr. White – well said! Your poignant message describes a healthcare crisis very well. Thank you for sharing this.

  32. February 6, 2012 4:17 pm

    I agree you have the general idea of what a patient wants, sir. You obviously have a whale of experience, and we can learn much from you.

    What patients also want is trust. I’ve worked in ER and I’ve practiced in chronic health care. They can get trust from acute as well as chronic care. I agree a chronic care setting has its added advantage of prolonged patients’ evaluation. We, as doctors, must learn to read our patients. It’s called body language. If we do it well, the rapport is instantaneous. It’s chemistry. The bond, along with a sincere smile, initiates the healing process.

    Patients want to get well. They don’t want to live forever. They want to live quality, healthy and productive lives. And when they do, we do.

  33. February 6, 2012 4:21 pm

    Well spoken. thanks

  34. February 10, 2012 4:12 pm

    I am late to this conversation, but I can’t help but more briefly sum up what I want as a physican who is now a patient; way overstated for dramatic effect, but probably universal.
    1) “Hey doc, I’m an American, give me a pill, not all this eating, exercising, and life style advice.”
    2) “I just want some control of my life back. I am not used to not being in control.”

  35. Audrey Watkins permalink
    March 17, 2014 5:56 pm

    Wow – this article was like 2 years ago+, but still very interesting. Interesting for the content of the article, and everyone replies.

    What I’m hearing and teasing out is – when dealing with healthcare, the patient portal needs to understand who I am, what phase in my life I’m in, my health status – and present me with appropriate information. From the aspect of the farmer whose sole concern is to get out of pain, to the chronic care individual whose top priority is getting out of illness, to the health individual who wants their fitness information part of the conversation with doctors. Basically, we want the portal to morph based on who we are and treat us with individual attention.

    It’s been great reading.

  36. March 17, 2014 7:14 pm

    Thanks for your words of encouragement. Two years old but the themes are still topical. If we make our message to consumers/patients relevant to what they want to achieve, they are more likely to adopt healthy behaviors.

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