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Pendulum Swings Between Personalized Care and Fixes That Benefit All


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"All patients are alike. This one complains about the same things that the last one did."

"Every patient is unique. We can never find a way to make each one of them happy."

Remember that 1980s public health paradox: Do you focus on intensive interventions that might produce significant improvements in outcomes for a defined, high-risk group or do you direct energy to system-level changes that may achieve more modest outcomes for many? This paradox is alive and well today, particularly when trying to improve outcomes attributable to patient engagement.

What aspects of care need to be customized to individual needs and what can be delivered in a standardized fashion to all of us?

It's a good time for both patients and health care providers to ponder this question. There is growing recognition that our participation in our care strongly affects how we do. Resources are flowing toward tantalizingly plausible personally tailored solutions that might boost our involvement and improve the impact of our care.

Perhaps in reaction to a storied history of health care delivery that seemed to go out of its way to overlook individual patient needs and preferences, the pendulum is swinging in the other direction. Look at the array of services and plans being marketed that indulge our natural preference for customized care! They range from promising unlimited choices of clinicians and treatments to the rapid expansion of concierge and retail clinic 24/7 health care.

Even the language associated with patient-centered care (e.g., respect, dignity, autonomy, etc.) favors customization that can accommodate the range of our individual abilities and circumstances. Some of the patient-centered care interventions that have gained ground recently include:

  • Matching people with cancer or type 1 diabetes or COPD with a personal health navigator.
  • Moving primary care from overburdened sole physicians to medical home teams to ensure a nuanced alignment between "only the care we want (and not more) and the care we need (and no less)."
  • Adopting good preference sensitive decision-making tools that are accurately detailed but not so cumbersome that they are only usable electronically and with professional supervision.

Far be it from me to criticize any effort to listen to patients and to respond to our individual needs. But it makes me slightly anxious to watch consulting firms pump out new personality indices that predict medication compliance; promote the latest tailored, peer-led diabetes management approaches; market highly personalized apps and reminders and advocate for a new crop of semi-professionals to deliver them to all of us having carefully assessed our needs and preferences.

These individually directed solutions are expensive, and their promoters make serious promises about their possible impacts. What happens when high-priced, high-potential interventions hit the wall when implemented, especially when sought-after and meaningful changes in patient attitudes or behaviors come up short? Unfortunately, if a program or service or approach doesn't deliver – doesn't save money or improve experience ratings or produce new behaviors – the intervention just fades away. But the problem remains. Sometimes another high-priced solution is waiting in the wings to take its place.

Before we load a container ship full of money into individually-focused interventions to improve patient engagement, could we take a brief moment to cruise through system-level fixes again? There sure have been enough changes in health care delivery recently to revisit them. Perhaps we've neglected some that might make a difference? Fixes where some concerted effort might be able to budge the system a little but that any lack of immediate big success wouldn't destroy? Fixes that would endure?

Here are a few:

  • A specific, intensive, long-term commitment to training clinicians at all stages of their careers to use optimal (evidence-based) approaches to prescribing medication
  • User-friendly, comprehensible drug package labeling that fully considers human factors and literacy concerns of an aging population
  • Legible, plentiful, clear and tested hospital signage
  • Electronic health records that are truly interoperable
  • Easily locatable and accessible instructions and support for after-hours and emergency care for all primary care delivery settings
  • Health literacy screens for every document produced by a clinic or hospital or health plan that its members/patients will see

Some of these are being partially addressed now. For example, the interoperability of EHRs is one of many goals for systems and clinicians but it is a very high priority for patients, who spend hours serving as messengers and information coordinators while waiting for progress. Similarly, individuals representing the pharmaceutical industry, academia, clinical medicine and health systems have been meeting for decades to find agreement about drug package labeling, but to no avail: Improvements are negligible and patchy where they exist. And of course, our non-compliance with medication continues to be a reliable sign of our recalcitrance, while most clinicians are satisfied with the way they prescribe drugs and have trouble envisioning how they could do it better.

Maybe interventions directed at changing health systems appear to be too far from the very urgent needs of sick patients. Maybe the effects of such interventions, because they are modest, difficult to measure and not of the return-on-investment variety, are just not snazzy enough to capture the imagination of health care leaders and the urgency they might bring to such efforts. These are the same reasons public health interventions have struggled to attract the resources and commitment needed to make a difference. But they should not stop current efforts to focus more broadly on system-level reshaping of health care delivery so that our contributions to its success are possible.

No, we are not all alike. We each bring a wild array of abilities, intentions, experiences and preferences to our health care. But every single one of us – regardless of our age, education, health status and insurance status – faces the same barriers that the above efforts would eliminate.

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman

Tags for this article:
Health Care Quality   Inside Healthcare   Prescription Drugs   Medical/Hospital Practice   Health Information Technology   Medical Education   Jessie Gruman   Find Good Health Care  

Comments on this post
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jim jaffe says
May 14, 2014 at 10:32 PM

the short answer is thati we need both evidence-based protocols administered in a personalized way. unfortunately, this has become a political issue construed in the usual binary either/or fashion. Several features of Obamacare with the focus on evidence-based medicine and narrower networks that limits -- often appropriately -- the choics of both patients and providers and provides grist for those opposed to Obama and his reforms.

Shoshanna Sofaer says
May 15, 2014 at 12:55 AM

Jessie, in talking about evidence-based prescribing, do you mean the drugs actually prescribed or how new medications are presented to patients? I don't think we have much evidence on the latter, yet it may be one way to improve adherence. Elements of the process include explaining the reason for prescribing, what the drug will do, and when to expect results, what side effects are most likely and which require immediate contact with the physician, etc. But here's a new one. How about asking the patient/parent if s/he thinks s/he may have a problem getting and taking the new medication? This could give people permission to admit their concerns up front and have them addressed then. This might save a lot of wear and tear and maybe even money.

Joe Selby says
May 17, 2014 at 9:29 PM

Thanks, Jessie for putting the spotlight on this "conundrum." I agree with Jim Jaffe - we need and can do both. Without any doubt, evidence-based, system-level approaches have raised the quality of care and improved health outcomes for patients with many common conditions over the past 20 years. But there are typically a portion of patients who don't benefit. Sometimes, these system-failures manifest as disparities. Simplistic system-level approaches can even worsen disparities. So, I don't see adding an awareness that individual patients can differ to an evidence-based, systematic approach as a swing of the pendulum, but as a patient-centered refinement of population health management. .