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The time that patients and their care coordinators spend in organizing healthcare is an “overwhelming” burden, amounting to eight hours a month for many, according to a new study of Americans involved in healthcare.

American adults “spend the equivalent of an entire eight-hour workday per month coordinating healthcare for themselves and/or their family or loved ones, according to a new patient experience survey conducted by The Harris Poll, on behalf of the American Academy of Physician Associates (A.A.P.A.),” the A.A.P.A. said in a press release.

“The survey also found that 65% of U.S. adults feel managing healthcare is “overwhelming” and “time-consuming.” This number jumps to 76% among younger adults aged 18 to 34.”

Vast undercount

Those who are involved in healthcare say this may be a vast undercount.

“While this study highlights patients are spending 8 hours a month on care coordination, I can assure you that that is a gross underestimation in circumstances of life-altering, life-limiting conditions, multiple comorbidities, [social determinants of health], and end of life care,” Grace Cordovano wrote on LinkedIn.

Cordovano, who practices at “Enlightening Results” and identifies herself as “Healthcare Navigating Solutionist| De-Frictionizer| Knowledge Seeker| Clarity Provider| Patient Administrative Burden Hacker” added: “The time-toxicity can easily hit 40-60 hours per WEEK on care coordination and unpaid caregiving. There are families who experience double these hours weekly.”

Additional findings from the survey:

  • “73% of U.S. adults say the healthcare system fails to meet their needs in some way.
  • “71% worry that the demands on healthcare providers are too great.
  • “61% say they only seek healthcare when they are sick.
  • “44% of adults have skipped or delayed care in the past two years. The most common reasons for doing so were worry about the cost (40%) and inability take time away to see a provider due to other responsibilities (30%).
  • “60% of adults who skipped or delayed care say they experienced some kind of impact.
  • “Nearly one in five care coordinators say that, as a result of helping someone navigate care they had to take time off work (23% among those employed) and their own health suffered (19%).”

The research was conducted online in the U.S. by The Harris Poll on behalf of The American Academy of Physician Associates among 2,519 US adults aged 18 years or older. The survey was conducted from Feb. 23 – March 9, 2023.

What you can do

This is a common problem, and there are not a lot of easy solutions. Here are some options:

  • Consult with other patients who have similar needs. Peer-to-peer help is one of the best ways to approach health care. Look for an online group or a neighborhood group involved in, say, elder care or cancer care, or a group servicing blind people or those with a rare disease.
  • Contact a hospital’s patient advocate if a hospital is involved. Here’s one example of a patient advocate. There may be a social worker, too; when I was hospitalized with premature twins, there were both advocates and social workers. A doctor’s office might have resources — perhaps references, or someone working as an advocate to take care of things like scheduling and so on.
  • Keep a file going for reference.
  • Some things that are not directly care-related, like transportation or extra meals or communications, can be achieved with websites like LotsaHelpingHands or CaringBridge.
  • Patient advocates exist to do this work for you. We don’t know a lot about their credentialing or their charges, but there are some trade groups that collect advocates. You could search “patient advocate” in your area, or ask friends and neighbors if they have any recommendations.

Jeanne Pinder  is the founder and CEO of ClearHealthCosts. She worked at The New York Times for almost 25 years as a reporter, editor and human resources executive, then volunteered for a buyout and founded...