To be a patient today is to be treated as a consumer. But treating patients as typical proactive, in control, well-informed consumers can backfire. Asked to take on increasingly complex decisions and digest ever-larger amounts of information, patients find themselves placed — often by design — in the driver’s seat. High-deductible insurance plans aspire to make the cost implications of care more transparent and implicitly shift decision-making to members. The “empowered patient” movement encourages patients to become hyper-informed and to take control over their care. But providing greater information, access and autonomy — so often successful in consumer settings — does not necessarily drive better care or experience. Consider these cases:
- An unexplained black-out sent a 61-year-old Boston woman to the emergency room and set off a flurry of visits to specialists to uncover the cause. Each doctor needed records of the diagnostics from previous visits. Hospital policy, however, required that patient data be released only to the patient, meaning she had to return to the hospital prior to any new specialist visit. Requiring her to control the information flow burdened her in the midst of a medical crisis.
- After years of struggling with her weight, a New York mother underwent bariatric surgery. She was inundated with information from her medical team about how she would need to change her behavior. Guidelines around when, how, and what to eat or not eat — the rules were overwhelming and constraining. Before long her weight had jumped again. For this woman, an excess of information (along with an assumption that she was prepared to absorb it) was part of the problem, not the solution.
- In a New Jersey health clinic, patients were calling 911 for minor illnesses and injuries, rather than the clinic’s 24-hour line. Even when clinicians asked patients to program the clinic’s number into their cell phones, 911 calls remained constant. Expecting patients to be proactive in this case was unrealistic; it took clinicians programming the number into patients’ phones for them to change their behavior and reduce 911 calls, saving money and resources.
We see three main reasons why treating patients as consumers can create problems.
- Patients don’t want to be there: People don’t seek out healthcare without a reason. Something is wrong and patients want to solve it and get back to normal. When patients are required to be proactive decision-makers, the health care system is often casting a very reluctant hero into the role.
- Patients aren’t equipped to be there: Even when patients are willing to be decision makers, they may not have the tools. At a time of unusual stress, the system asks them to absorb technical information and make difficult decisions that require specialized expertise.
- Patients aren’t in it alone: To design for patients alone is to forget that they are part of a complex system and aren’t often independent decision-makers. Decisions are shaped by other stakeholders: friends and family who support the patient, the insurance company who foots the bill, practitioners who provide care and expert advice, the hospital administrators who inform system-level protocol, and so on.
When the people who design health-care delivery understand the difference between a patient and a consumer they can create more effective experiences.
For example, a series of diabetes decision aids developed by the Mayo Clinic Center for Innovation exemplifies how to design for patients as patients. Treatment decision cards use plain language and clean graphics to represent costs, risks, side effects, daily routines, weight change, and other considerations for common diabetes treatments. The tools help to align expectations around the many facets of treatment and provide a metered amount of information pertinent to the options at hand.
Most importantly, the intent is not to saddle the individual with the burden of the decision, but to help patients and providers work together to make decisions about treatment. The cards are designed to provide a mechanism for discussions around trade-offs and lifestyle considerations, providing an avenue for conversations around weight, blood glucose testing, daily medication regimen and behavioral changes that are fundamental to learning to live with diabetes. They are tools to enable a dialogue, meant to be used by the doctor-patient team, rather than guidelines or directives handed off to the individual.
The program acknowledges that treatment needs to be doable, rather than ideal. A clinical trial piloted the decision aids in a randomized group of clinicians; a second group provided usual care with an educational pamphlet. The six month trial demonstrated that patients who used the cards were more knowledgeable than usual-care patients, and more involved in the decision-making around diabetes medications.
As health-care delivery undergoes a profound transformation, the reflex to put patients in the driver’s seat can result in poorly designed delivery systems that don’t necessarily improve care or reduce costs. Health-care systems, providers, policy makers and designers need to take a step back and assure that in their eagerness to “consumerize” the medical experience they don’t undermine the quality of care by demanding more of patients than they should be expected to deliver.
Augusta Meill is vice president of program development at Continuum, a global design and innovation consultancy, and Gianna Ericson is a senior strategist at Continuum.
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Patients do come across as very entitled. Even at one of the largest free clinics in the nation patients sometimes act like spoiled children and take advantage of the fact that the healthcare is free. You will see them with fancy car keys and the latest designer hand bags and gadgets then when asked to donate to the clinic they just give you a blank stare. Granted there are plenty of really needy people but there is a large number of people that are out to take and not ever give back. Also patients need to take better care of themselves instead of looking for a pill for everything (put the twinky down and get up off the couch!), this will go a long way in reforming our healthcare system.
I don’t know and perhaps that is true in some areas. I just know from experience that I have with my own family, coworkers and friends. I grew up in a family of nurses.
I do know that we are more likely to use preventative care and holistic and alternative forms of medicine as many of us are trying to be proactive and keep our health good versus waiting until our health fails to then trying to get better or maintain less than optimum health. But that comes from seeing people whose health has failed due to not taking care of their bodies.
I personally make choices for myself and my son that are in the best interest of our long term health such as good diet, exercise and education. The only time we see his doctor is for his annual well-child checkups. I get a PAP smear every two years or so and haven’t had a physical in four years and I am 46 years old. Of course I get my regular mammograms but again that is preventative care.
Most of the nurses I know are like that. We are reluctant to bring our families in if we feel we can manage care at home, which usually we can. My son goes to school unless he has a fever or something contagious. The majority of nurses I know are like that as well.
I do understand that not all people are well educated in caring for their family members and they get scared which is why I try to educate them when they come in as to how they can manage care at home. But some people don’t seem to want that help.
Anyway my original comment was not about healthcare workers abusing the system, it was about people treating the medical system like it was something closer to going to a hotel or a restaurant where they are supposed to be catered to rather than a place of business where there are other peoples lives that are actually in danger of being lost.
Where doctors, nurses and other hospital staff work hard, often extremely understaffed, to make sure that those lives are not lost or compromised. Where we go and leave our own families to take care of other people and their families. Where we get verbally and sometimes even physically abused on a DAILY basis by people who feel we don’t deserve better even though we may have saved their life. It can be a rewarding job and at the same time it can be depressing.
My point is that consumerism is damaging the healthcare system by creating an attitude of entitlement. Healthcare, in my opinion, is a privilege and should be treated as such.
I actually thought I had read that healthcare workers, as a population, use more per capita care than the general population. I can’t recall the source right now, but I don’t think it was that long ago that I’d seen that statistic.
Healthcare workers, from my experience with my co-workers anyway, use the doctors the least and usually only when absolutely necessary. We do advocate for our patients alot, at least most of us do, as most people do not know what options are available to them nor do they understand that as a patient they have rights. There are nurses who don’t really care unfortunately, but most actually do try to make sure that patients have what they need and understand what their options are. It’s the same with doctors. You have the ones that really try to communicate with the patients and the nurses and the ones who you wonder if all they are in it for is the paycheck.
What bothers me are the people who abuse the system and it seems this is becoming more and more of a problem. There are people coming into the ED at night who really NEED to be there. They may be having a heart attack or a stroke, kidney failure, be on chemo, their appendix might be rupturing, they may be elderly and have suffered a hip fracture…and other multiple things that demand time from the nurses that are truly time consuming and necessary.
But then you get the ones that are there that truly do not need to be yet they expect you to drop everything and wait on them as though they are the only person in the department. And they complain if they don’t get what they want right now. And many times they are people who are in over and over again looking for narcotics and benzodiazapenes. Its just frustrating when we are expected to cater to people who are truly abusing the system for allocated money by the new government legislation.
This is so strange! I’ve not worked in ED, but in my experience, healthcare professionals are consistently the biggest complainers – whether for themselves or for others. It’s been my observation that healthcare professionals use their connections to get the care/service they want (and have access to such back door approaches), so they don’t think it’s important to get the same support for patients. Then they say “patients just don’t/can’t understand”. I just spoke to a friend who’s worked in healthcare for decades about how unhappy she was with an interaction with a new specialist she saw. We spent some time on the phone talking about how to make it so she could make her own informed decisions – you only know about those options if you work in healthcare or have had extensive experience as a patient and have “learned the hard way”. I think we can do a much better job of making patients informed and educated – they want that more than those in healthcare know (either for themselves or for people they care about); they just don’t know how to get it.
Patients are never in the driver’s seat, yet, you’ll read the usual commenters tell you otherwise. The role of care is symbiotic, if the best word for the arrangement. We are here to help people help themselves in the end if health care is allowed to do the job right. But, as the author says, patients can’t handle what is involved in preventative care, and, let’s face it, this medium has made people even more lazy and nonspontaneous. Come on, colleagues, how many patients will say they spend as much time outside their home doing something proactive and expending some biologic energy when not at work as they do on a couch or chair in front of a screen!?
First of all, this alleged truism that the customer is always right is bs, when in fact it is the customer alway has the right to voice their opinion and expect to be heard and considered. Two, this is not about selling a product or accessing a service that an individual can try to learn and practice on their own if they want to take the risk trying. Three, a business model more often operates on the premise of profit making, and that does not coincide with providing care at it’s optimal basis; at some point making money will cloud judgment in providing full care options. See insurers for point 3 as example one!!!
At least the authors of the site posted this column.
As a registered nurse in an emergency department I can say that I feel often times more like a waitress than a nurse. It seems that the actual treatment is not as important as whether the patient is satisfied with the care they receive in order to get reimbursements under the new healthcare reform legislation.
When a patient comes in to see us, as you stated, they are reluctant to be there and are not happy to start with. Then they expect to be seen by a doctor right away and have their treatment be the number one priority when there are multiple patients in the department. They want warm blankets and water and when we cannot bring these things to them at the drop of a hat they get more upset.
When the doctor does not come in to see them for an hour but we have drawn labs, addressed pain and nausea and done xrays so they are basically comfortable but waiting to results they get more upset. “Why is it taking so long?”
You have no idea how many times I have asked a patient about their level of pain. “Pain is subjective” we are told. “Pain is the fifth vital sign”. Well when you have people telling you time and time again their pain is 10/10 and they are on their cell phone talking and smiling…it is really ridiculous. But we are expected to treat them for this “massive” pain or we may have repercussions as the patient may say they were unhappy with the care they received.
But we have allowed these consumers to now decide what real pain is and how much pain medicine we should be giving them.
We have allowed for the “consumer” patients to now dictate to us how our care will be provided and we are jumping through hoops to make sure people are happy when we should be jumping through hoops making sure they are receiving safe care. It is not safe in my opinion to be handing our multiple doses of Dilaudid for headaches and backaches. Or giving out Ativan for every little stress induced anxiety.
We are creating a society of consumers who believe that the answer to all of life’s problems come in the form of a pill or an IV medication. This is really scary as I watch parents come in with their children and then the same kids are growing up and mimicking that behavior.
What happened to people dealing with life naturally? Our society and economy is in chaos and our answer is to medicate it. I think this consumerism is going to bring great problems to the healthcare industry unless we find a way to modify it and make safe, effective, preventative care the priority and not customer service.