Clarification: I might get fired for this blog if I don’t say up front that health care transparency is 100% necessary and I wholeheartedly believe in it. But not for patients alone.

Now that I have that out of the way….

There are some who believe that if we simply create easy to use tools for patients with price information for hospitals, facilities, and providers, they will become informed consumers. Health care will become a free market and people will stop going to expensive doctors and hospitals who will, in turn, be forced to lower their prices. All of our health care affordability problems will be solved! However, while this works for other types of products consumers purchase, accessing health care is not the same as buying a dishwasher.

Patients alone should not be relied on to change the health system when many are already fighting for their health. It’s callous, unrealistic, and feels a little like punishing them for being sick.

Expectations vs Reality

During my battle with breast cancer last year, I had more health care visits and services than in all my 48 years combined. I’ve been working to lower costs and improve health care most of my career, so I knew what to watch out for going into my treatments; namely the potential for big price tags for services depending on where I chose to go for care. After all, I helped build CIVHC’s Shop for Care tool and I used it to pick a low-cost imaging center at the beginning of my journey. I started out feeling really good about myself knowing that I was making thoughtful choices with my initial mammography, ultrasound, biopsy and MRI.

One point for Cari! ????

Suddenly, however, my choices weren’t so straight forward. After receiving an aggressive cancer diagnosis, I only had a few short days to choose a cancer team and treatment center. I had to consider my insurance coverage, who was in network, which providers were the “best,” and how far away they were. I weighed all options and ultimately chose to go to a facility that was close to my house where the oncology team came highly recommended. Were they the least expensive? I’m not sure because “cancer” as a diagnosis isn’t exactly shoppable, and at that point I had no idea what treatments and procedures I would need. I did know that the hospital system I chose is among the highest in the state in terms of prices for other services. It was highly likely that I had chosen poorly from a cost perspective.

Minus one point for Cari. ☹

It came down to what was best for me

I’m not proud of that decision and still feel guilty knowing that I might have saved my insurance company and Colorado’s health care system a lot of money. It came down to what was best for me. I had a lot to consider: expedience, insurance coverage, travel time, convenience, and overall quality of care. Cost simply wasn’t the most important factor in my decision.

As I began the treatment process, I tried to bring down costs where I could. I pushed back on having a full body CT scan and bone scan, questioning their value after already having had a clean MRI. I ended up conceding when my oncologist said I needed them before I started chemo in the coming weeks. I know hospital imaging is more expensive but I had so little time to make the “better” choice and I would have had to figure out where to go, drive longer distances, take more time off work, and deal with making sure the results got communicated back to my cancer team. I was already extremely stressed and worn out from facing this unexpected, life-threatening situation, and the idea of going somewhere else seemed unbearable and exhausting.

This is where I get to the callous and unrealistic part of making patients responsible for driving down costs. Sure, there are some instances where expecting people to shop for health care services is reasonable. We could all be better consumers of health care and make informed decisions if:

  • It’s not urgent;
  • Insurance isn’t dictating our providers;
  • We have all the time in the world to research options; and
  • Can travel to get the best care at the lowest price.

That’s not reality for many people, nor should it be the expectation that patients alone can change this costly system. We didn’t design it this way and we shouldn’t be expected to carry the burden of fixing the cost problems when we’re mentally and physically exhausted, stressed, and feel horrible.

Who can and should take the lead?

Payers, providers, employer purchasers, and policy makers have the power and ability to use the transparency tools available to make the types of system-wide changes needed to bring down prices for everyone. It’s not easy and takes conviction, determination, and the will to fight, but it can be done. Even now, Change Agents committed to improving the lives of Coloradans are implementing promising approaches across the state. I say to them: keep fighting. Never forget that one day you or your loved ones may be the patient and will need the system to work for you too.

About the Author:

Cari Frank is CIVHC’s VP of Communication and Marketing. She’s been with CIVHC since 2012 and leads promotion of CIVHC’s work through educational content and public CO APCD data analyses, community and Change Agent engagement, and legislative support. Formerly, Cari was with the Colorado Rural Health Center and the Colorado Medical Foundation where she supported rural hospitals and clinics and led health care quality improvement projects. Outside of CIVHC, Cari teaches fitness classes, travels, and tries to enjoy all Colorado has to offer with her family and friends. Contact Cari at cfrank@civhc.org.

About CIVHC:

CIVHC helps a diverse range of individuals, communities, and organizations make informed decisions to reduce health care costs and health inequities while improving the health and lives of Coloradans. We have a number of transparency tools available including: