In 2020, Patients Will Need to Be More Demanding

One of the last sessions I did as a panelist this year was part of a conference for patient groups across the country about patient rights related to transparency and access. My panel was asked to discuss current and proposed policies related to health care transparency and access to care, so I noted:

  1. Various state efforts to help patients get more information, especially about hospital prices;
  2. The November 2019 Department of Health and Human Services, the Department of Labor, and the Department of the Treasury’s proposed rule to improve transparency on the price consumers pay for certain health care services; and
  3. The importance of advocating for what the National Health Council calls Patient Factors of Value as payers rely more on so-called assessments of health care “value” from third-parties, such as the Institute for Clinical and Economic Review (ICER).

As I heard the audience questions, though, I was reminded of the limitations of policy making. Yes, policies should support patient transparency and access. No question. But perhaps more important is changing the way we act.

To put it bluntly, patients are going to need to be much more demanding.

And not just patients, but also anyone who supports patients, whether it be family members, friends, health care providers, employers, administrators, or legislators, will have to be much more demanding.

This means patients can’t wait for information to be provided by the health plan, hospital, or specialist.

We need to ask for information we want at every appointment, and before an appointment, as well.

We need to ask for information on cost-sharing. On treatment alternatives. On what evidence exists for the treatments. On how to get a second opinion about the diagnosis.

We need to ask about what supports are available during and after treatments.

We need to ask: What didn’t I ask? Who else should I talk to?

Making various kinds of health care information available may prove to be useful, but real change will need to be driven by patients and their supporters. Patient rights are essential, but in 2020 (and beyond), patients, and all of us who support them, will have to be much more demanding.