“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.
Jessie Gruman is the founder and president, Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs at the Prepared Patient blog.