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Are Individuals With Chronic Illness More Passive?

May 17, 2010

Some recent experiences we had at the Center, as well as some data published by my friend Susannah Fox at the Pew Internet Project, have me noodling about chronic illness.  This is going to motivate some readers to jump all over me, and I welcome the dialogue. But, please, before you do, take time to read and contemplate.

Lets start with the real data.  Fox’s report on the Internet and Chronic illness is a must read for any care provider with a goal to engage patients over the web.  It starts by comparing the fact that although 81% of adults reporting no chronic disease go online, only 52% of adults with two or more chronic illnesses go online.  It goes on from there. For instance 24% of individuals with two or more chronic illnesses use the wireless internet, whereas 50% of those with no chronic illness use the wireless internet.  There is something qualitatively different about this group in terms of their use of this technology, independent of other variables such as age and socioeconomic status.

This contrasts wonderfully with a feature in Wired published in July of ’09, called Living By Numbers. One of the stories in that feature points out the success of Nike+, a product co-developed by Nike and Apple.  It involves a shoe insert, which has an accelerometer embedded.  That device communicates wirelessly with an iPod, tracking steps and acceleration.  Synchronizing the iPod to a computer allows information about a work-out to be upload to the Internet and shared with others via a social network.  According to the piece in Wired, more than 1.2 million runners have tracked more than 3 million miles.  Nike says that if you upload 5 runs, you’re hooked – you keep uploading.  This is great success by any estimate.  When I read it last summer, I paused to ask….’why is our experience at the Center so different’?

One of our programs is called Diabetes Connect.  Patients with diabetes are chosen by their health care provider because they are viewed as being a good fit for a data-tracking program.  Each patient gets a device that retrieves glucose readings from their glucometer and transfers it to our database.  We present each individual’s readings to them on a customized website, which is also available to a nurse in the patient’s primary care practice. The nurse can determine from a dashboard view which patients deserve attention and then care for them in the moment, when the need is greatest.

We’ve learned that there is a correlation between uploading one’s glucose readings and improved outcomes. There is also a correlation between how often the nurse logs onto the site and health outcomes for this patient population.    Patients tell us that it is motivating to see one’s own glucose readings in the context of their lifestyle, but it is more motivating when the nurse from the practice looks at the data and communicates with them.

We recently did some phone outreach to those individuals who were asked by their doctor to join the program, but did not participate.  Remember, we have good evidence that these people will have worse outcomes.  In a bundled payment, shared savings or capitated environment, they’ll cost us more.  Or, from another point of view, they cost their employer more.  I was fascinated by some of the reasons these folks gave for not adhering to their doctor’s advice.  Here are some notes from the staff member who called these individuals:

“Patient said it is just too much work for him to do. The doctor checks on him anyway. He does not think it is necessary to do it, and he wants to give back the equipment.”

“This patient honestly seemed like he is not interested. I asked if I could help him, because he does not have any readings since February, and he said “no.” I asked if there is a reason why he had not uploaded, he said “no.” I asked if he will want to continue doing it, he said “eventually.”  That is as much as I could get from him.”

“Patient said that she does not think it is necessary for her to upload (she has done it before) because Dr.  XXX does not look at the readings, and she sees him every 8 weeks anyway. So, she does not want to do it.”

“Spoke with patient, who said she just “hasn’t gotten to set it up yet.” She just forgets, but when she does she will call if she needs help.”

What a stark contrast to the Nike data.  Perhaps its not a fair comparison as Nike’s report was on people who did use the system, not on those who did not use it.  If we only read the article in Wired, we’d conclude that everyone is dying to upload their health information and have it reviewed by others in a social network.  Our experience with chronic illness is much different.  It takes cajoling to get people to achieve the activation energy necessary to start uploading and once they have done so, their participation generally falls off if they do not get some sort of coaching feedback, ideally from their provider.

Another difference is that users of Nike’s system pay out of pocket for the pleasure of using it.  In our research to date, we’ve not found any significant cohort of chronically ill folks willing to pay out of pocket for a connected health service.  A third difference is the proactivity of the fitness buffs – sure they can learn something from a trainer, but in general it’s a self taught activity and they seem highly motivated.  Our diabetes patients seem, in general, quite ready to abdicate responsibility for their condition to a doctor. The comments above have a disturbing passivity about them.

The question one is left to ponder is whether that passivity is a result of some co-morbid cognitive state or whether we, as health care professionals, have convinced our patients that they can’t or need not be actively involved in their care.  I’d love to hear your thoughts on this.

24 Comments leave one →
  1. Chris Wigley permalink
    May 17, 2010 8:50 pm

    The statistics from Nike sound very impressive, but that only amounts to 108 miles per runner, and at 15 miles per week then this is only about seven weeks of use – depending on how long these have been on the market this may not represent that high a utilization rate!

    But looking at your numbers and applying them to the US and COPD alone then at an estimated incidence of copd 0f 7% and 300 million population that is 21 million people with COPD. Assuming 50% of these are seniors, and 24% use the internet then you have 2.5 million who are prime candidates for “connected health” or “e-care” or whatever the current buzz-word is.

    Most of these are on a limited budget therefore open source software that tracks off-line and raises a “red-flag” when vital signs are getting out of safe range would then prompt these seniors to get professional help.

    You could “hold the hand” of 2.5 million people most of whom have two chronic health conditions and it would cost the nation virtually nothing and save a fortune in avoidable hospitalizations!

    Just for the record I have very severe COPD, three heart stents and I am very active with support groups on the internet

  2. May 18, 2010 3:19 am

    Joe,

    Thanks (once again) for reminding the technologists that their very clever gizmo’s and systems are but small components in a much larger health eco-system – and thanks also for reminding policy developers that raw economics is not a sufficient lever to induce behavioural changes and healthcare treatment compliance.

    I suspect that ‘cajoling’ is not the only route to achieve the necessary ‘activation energy’.

    We do not yet understand enough about the complex behavioural side-effects of some treatments and care regimes – and I’m not just thinking here about the depressive effects of some medications for hypertension. Investing in lifestyle/health education deserves a greater focus – and the challenges of dealing with chronic conditions are, in part, a reflection of that long-term under-investment.

  3. May 18, 2010 1:57 pm

    I wonder if part of the difference isn’t that running is a hobby (even a passion for some), while diabetes is a burden and nothing like a hobby or special interest.

  4. Dimna permalink
    May 19, 2010 11:16 am

    I agree with your comment,
    ” whether we, as health care professionals, have convinced our patients that they can’t or need not be actively involved in their care.”

    I try to teach my patinets to check their glucose level everyday.
    When I have given them the meaning of glucose checking and exact action points, they accept my order to check every 4 times a day even pre-diabetes or first diagnosed diabetes.

    As you already mentioned, I try to coaching them, and give them a chance to make their own decision for managing diabetes.

    I think it is most important to notice them, diabetes is self management disease and depend on their actions.

    After accepting these ideas, my patients filled the diabetes log book.

    Even not all patient, but meaning level.

    • Sandy O. permalink
      May 19, 2010 4:12 pm

      Joe- This is a subject near and dear to my heart. In response to your comment that it “takes cajoling to get people to achieve the activation necessary…”, I have learned that people don’t take responsibility to change their habits because there is something in that habit that is satisfying a fundamental need of theirs. There is a benefit to clinging to the behavior and until the underlying fundamental need is met elsewhere, change won’t happen.

    • May 20, 2010 8:21 am

      An astute comment, but tell us…how do we make the switch?

  5. May 20, 2010 7:06 pm

    Joe,

    Thanks so much for citing the Pew Internet Project’s data on chronic disease and the internet. If anyone is curious about how we reached our conclusions, please know that we not only make our reports available for free, but also our data sets (see: http://pewrsr.ch/a2zrcO)

    Your post reminded me of a panel I saw at the California HealthCare Foundation’s Chronic Disease Care Conference in 2008. Three patients spoke about why they decided to take control of their health.

    During the Q&A, an audience member asked if a provider can create decision points like the ones which prompted two of the panelists to make positive changes in their lives. One answered, “No, if the patient isn’t ready, they won’t make a change.” He counseled providers to screen for depression and aggressively treat it, but stop the fear-mongering since “it becomes meaningless.” He said that providers can continue to remind patients about how to manage a chronic disease, but the why comes from within each person.

    Here’s my full post on that panel:
    http://e-patients.net/archives/2008/12/patient-voices-at-chcfs-chronic-disease-care-conference.html

    What I heard at that event (and have heard over the years in my research into the social impact of the internet) is that gizmos are not going to change most people’s behavior. What will motivate change is still a bit of a mystery. I’m personally fascinated by the research being conducted by Nicholas Christakis and James Fowler, authors of the book “Connected,” which finds that health behaviors (both positive and negative) are contagious.

    One more link, since your post also reminded me of this great debate in January, when someone else pointed out that fancy technology may not be the answer:
    http://e-patients.net/archives/2010/01/whats-the-point-of-health-2-0.html

    Thanks again for the cite and the inspiration to keep looking for answers!

    • May 21, 2010 7:14 am

      So well stated and thanks for all of the additional context.

  6. Jenelle permalink
    May 21, 2010 2:15 am

    I think that as you say you, as health care providers, have to some extent convinced patients that they should not be overly involved in medical decision-making. Just look at the furor over patients finding information on the internet, for example.

    With respect to the patient who wasn’t uploading readings because “the doctor didn’t look at them anyway,” she has a very legitimate point. Why bother putting forth the effort for nothing? There needs to be some perceived benefit.

    Also, about the bundled payments and non-activated patients costing you more – I was not pleased (although not surprised) to see this brought into the conversation. Patients do tend to view physicians as being money-motivated. I think that this is justified to some extent, as this sentence shows. When patients perceive that physicians want them to “adhere” for reasons that are relationship-driven, they may be more likely to do what is needed. I know that I would be more likely to take suggestions that I thought were driven by a caring, trusting motive than I would be if I thought the suggestions were money-driven. I understand that this is the reality of your world, as providers, but the profession’s societies and lobbying groups publicly hammer away at the compensation issue whenever possible, as if compensation were the only thing about which health care providers are concerned. While I am sure this is not the case for most, perception does indeed matter.

    Also, many people who have diabetes use Medtronic products and Medtronic has a website that allows patients to very easily upload readings from their devices. The doctor, presumably, then logs into the site (mine does) and has a very complete view of what has been happening with the patient’s blood sugars. The patient just gives the doctor a password. I would much rather do this, and I would not add an extra task to that. Patients don’t like extra tasks any more than doctors do.

    What needs to be understood here is that people cannot control the actions of others. You can suggest, recommend, attempt to persuade, etc., but when it comes down to it, the patient is the one in control on a minute-to-minute basis (especially those who have chronic conditions). They’re the ones making the decisions and, frankly, this is how it should be. I have an excellent physician who helps me tremendouly. But I read blogs and tweets about how patients don’t “adhere” to treatment recommendations and it just smacks of a pervasive, guild-wide need to control others. Some of the posts seem angry. Others seem desperate, for any number of reasons (compensation included). But frankly, not many seem to be driven by a desire to reach a positive outcome for the sake of helping another human being increase their longevity. Patients sense this. The true motivations behind the persuasive dialogue (sometimes monologue) are not necessarily opaque. Yes, everyone involved needs to make a living. But sometimes providers might remind themselves that the desired goal/outcome originated with an altruistic ideal… the health and longevity of the patient… not for any other reason. The desired outcome has, unfortunately, morphed away from its altruistic roots. With health care reform, I fear that this goal may become increasingly distorted by the desperate attempts to control people so as not to lose money under a bundled payment scheme. This is a slippery slope. And it is thin ice for the relationship.

    Sometimes it is more effective to work *with* people to help them achieve positive outcomes than to attempt to control and dictate what they do. An ongoing inclusive dialogue is the only way to figure out why a patient is not adhering and then try to find ways to make the recommendations fit the patient’s lifestyle, available time, literacy level, preferences and abilities.

    Sorry this is so long.

    • May 21, 2010 8:28 am

      Thanks so much for putting so much thought into your comment. I wanted to respond to a couple of points. On paragraph 2, the point I was trying to make in contrasting the two groups is that the diabetic patient should be as motivated to improve his/her condition by utilizing connected health as is the fitness buff on the Nike plus program. There is so much an individual can do independent of the doctor, that it saddens me that that individual feels so in need of doctor participation.

      On paragraph 3, I would just say that professionalism demands that we as providers put the quality of patient care above self gain. I believe most of us strive to achieve that. However, we all have families to feed, kids to put though college, etc. and as humans are motivated within the economic context that surrounds us. I don’t know what your profession is, but wonder if you would work for free. Thus my point was to remind folks that with payment reform on the horizon, we as providers will have incentive to help patients achieve more self care. This is a good thing. That incentive has not been there to date.

      Re: your medtronic system, it sounds like a terrific one and it sounds like you have a terrific doctor. We find that connected health is at its best when data automatically uploads from sensors (as opposed to self-entered data), when the data is displayed for the patient/consumer in a way that they find meaningful, and when there is a coaching resource who has access to the same information. It sounds like your experience with Medtronic achieves most of these goals.

      While I concur that people cannot control the actions of others, I don’t believe payment reform will distort the outcome. I expect it will work to help us achieve more patient self-care, as I mention above and I think that is a healthy evolution.

      Lastly, I completely agree that it is more effective to work with people than to dictate or control. My only point is that folks with chronic illness would be healthier and better served if they took more self control of their condition management.

  7. May 24, 2010 1:39 pm

    This is a fascinating topic – and one that must sure boggle the health care providers aiming to care for patients (and meet performance metrics), researchers, and those looking for scalable technology and business solutions targeting this growing public health problem.

    After a quick lit search over my lunch hour, I discovered that this question has been pondered for at least 60 years in the medical literature, and some progress has been made in understanding the role of PERSONALITY and chronic illness. A few are highlighted below.

    1948 –
    Ruesch and Bowman asked this question in their 1948 JAMA article
    PERSONALITY AND CHRONIC ILLNESS (J Am Med Assoc. 1948;136(13):851-855. ) They wrote:

    ” The way a person lives determines in part the disease he will contract. ….While epidemiology and public health and preventive medicine have been particularly interested in the habits of people with occupational and infectious diseases, psychosomatic medicine has concentrated on similar aspects in persons with chronic disease. However, it was found that study of habits alone was not sufficient, but that the whole life situation of the patient had to be encompassed. ”

    1996 –
    Wiebe and Alan, Journal of Personality. Vol 64(4), Dec 1996, 815-835.
    PATIENT ADHERENCE IN CHRONIC ILLNESS: Personality and coping in context.

    “Previous reviews have concluded that there is no evidence for a predictable association between person factors and regimen adherence in chronic illness. The brief current review of the literature reveals that past work has been limited by the lack of a common structural theory of personality and the failure to consider the interaction of person factors with disease and treatment context. Application of the five-factor model of personality to adherence research will reduce divergence in the field and aid in the orientation and interpretation of future work. Evidence suggests that an interactive perspective recognizing the moderating influence of contextual factors on the behavioral expression of personality traits will contribute to the prediction of adherence behavior. ”

    2007 –
    Chapman, Lyness, Duberstein wrote PERSONALITY AND MEDICAL ILLNESS BURDEN AMONG OLDER ADULTS IN PRIMARY CARE (Psychosomatic Medicine 69:277–282 (2007)

    They concluded “Our results point toward the necessity of considering Conscientiousness and other personality traits in studies of risk factors for aggregate morbidity. More detailed characterization of at-risk populations will increase the likelihood of constructing informed and effective prevention, intervention, and policy initiatives.”

    This is probably an overly-academic response to this issue, but one that is usually considered in an anecdotal way. I believe we as health care providers have undervalued the mind-body factors in health in large part because we have lacked reliable tools to assess this determinant of health.

    Simply saying that we need a better understanding of the behavior and personality of those with chronic illness to more effectively engage them in connected health technologies is the obvious punch line here, but I look forward to hearing from those with more expertise in this area to bring this topic of discussion to a higher level.

  8. Josie Henderson permalink
    May 24, 2010 4:15 pm

    Joe,

    I think one difference between the Nike plus program and patient self-management programs such as Diabetes Connect is the self-image each reinforces. Participating in Nike plus is a positive reminder to its users that they are healthy, fit and making progress toward getting even stronger. Participants in patient self-management plans, on the other hand, are continually reminded that they are chronically ill, less than healthy, and whatever progress they make is usually in the context of minimizing their illness and not “winning”. It’s human nature not to want to focus on the parts of ourselves we perceive as less than ideal–even if focusing on them is in our own best interest and health.

    I wonder if Diabetes Connect offers rewards to patients for participation and/or improvement? Does it have a user interface that promotes a positive self-image to its participants–language and processes that leave the patient feeling better about themselves and not just reminded of their identity as a diabetic?

    • May 24, 2010 7:48 pm

      This is a good insight. We do our best to promote a positive environment in the connect programs. I’m sure we could do better at this.

  9. May 24, 2010 8:29 pm

    As a behavioral psychologist, I find this discussion fascinating.

    The issue of who will be self-motivated and proactive enough to use technology to better their health is complex.

    Overall, I believe the way health care is done now, does create patients to become overly dependent on doctors to “do something” to them.

    This may create the passivity you see when people say, “the doctor will take care of it.”
    And this is how we have conditioned people to look at health care. A cheap co-pay, quick check in with a doc, who prescribes something and sends you on your way with a follow up appt. Of course this is a generalization and I”m sure there are many physicians who offer more support, but overall that is the model.

    But,that said, is it possible that people who are chronically ill are passive in other parts of their lives? Is there some correlation between letting things “just happen” and illness? It seems taht people who are motivated enough to use the Nike technology are probably motivated to take care of their bodies and don’t want to frequent their doctors.

    My hypothesis is this: The passive, unhealthy behavior probably comes before the passivity about technology.

    So the treatment model becomes one of integrating a behavioral health or psychology piece. Teaching people that they have ownership of their health, not their physician. Teaching the relationships between daily decisions and behaviors and overall health and well being.

    As health care providers WE know this, but my observation is many people don’t see the connection.

    So the order of operations in getting the chronically ill to use technology probably is to diagnose, prescribe, teach, motivate, reinforce, assess outcomes,reinforce again, repeat.

    My sense is that without the teaching, motivating and reinforcing it will be very hard to get a passive person disconnected from their own body and health to use any technology consistently, since they don’t yet see the point. They feel they don’t have any control, so they think, “why bother making an effort?”

    Just one way of looking at it….

  10. Sandy O'Keefe permalink
    May 25, 2010 1:07 pm

    In addition to screening for depression (and thus possibly involving a mental health clinician as part of the “team”), I am a huge proponent of healthcare coaching as a strategy to help uncover what really motivates patients as well as which needs aren’t being met that might get them to the next stage of change. Together the coach and patient form a partnership where they create action-oriented goals based on the patient’s strengths.

    As you stated, some patients are not motivated to upload their readings with Diabetes Connect because their doctor doesn’t look at the readings. As primary care physicians are being saddled with more and more to do, I wonder if there is opportunity for an algorithm to be implemented that would email/page the provider (doc/nurse/NP or an RD who is a Certified Diabetes Educator) if cause for concern arose. The designated provider then could make a clinical judgement and then involve the coach to work with the patient to discover what is going on either in person, by phone or using a form of email/chat.

    Of course the caveat is that health coaching is not yet reimbursable by insurance, but there are alternative routes for funding.

    I also think that the comments from Josie are very important. We often get to the point with patients where fear-mongering comes into play. I wonder – what if we rewarded those patients who are actively managing their diabetes and “winning”. Would we be able to prevent them from getting to the point where these healthy behaviors decrease and they become the “uncompliant” patient? I think we spend so much time reacting to behaviors rather than being proactive and coming up with ways to sustain positive behavior that we will just be running in circles. I think involving the tech-savvy person who is managing his/her diabetes and engaging them to sustain this has enormous potential to really create some connected health opportunities.

  11. Paul Heinzelmann permalink
    May 28, 2010 9:09 am

    … I came across this article today, decided to throw it in the mix as it seems relevant.

    PATIENT AND PHYSICIAN BELIEFS ABOUT CONTROL OVER HEALTH
    (Journal of General Internal Medicine, May 2010)

    bottom line: medication adherence [and this can likely be extrapolated to adherence to other interventions] is affected by whether physicians and patients agree on how patient actions will affect health. Patients whose attitude matched that of their doctors refilled their prescriptions more quickly than did patients with different views.

    So, it seems that in addition to innate behavior determinants (personality, temperament), a person’s knowledge, beliefs, and attitude will determine to what degree an individual will engage with technology or participate with a health team (provider, coach, nutritionist). As noted, “one patient’s empowerment is another patient’s burden.”

Trackbacks

  1. ICMCC News Page » Are Individuals With Chronic Illness More Passive?
  2. No One Cares About Your Health (or No One is Willing to Pay For It)! « The cHealth Blog
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