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Just Listening Isn’t Enough

Last week marked the end of the Centers for Medicare and Medicaid Services (CMS) Patient-Focused Listening Sessions. There was a total of 10 sessions, one for each of the 10 prescription drugs that were chosen for the Medicare drug price negotiation program. Before I get to my evaluation of the listening sessions, I want to make sure I explain that I appreciate any time that the government gives its citizens, in this case patients, the chance to have any form of input on how the decisions that the government makes could affect them. My evaluation, while mostly negative, is intended to point out ways that CMS can improve the process of attaining and utilizing patient input to improve the entire healthcare process for those who CMS serves: the patient.

In an earlier blog I discussed why using the word negotiations was a misnomer since the result of the CMS “negotiation” process was simply CMS setting prices for the selected drugs. I bring this up again because I think the patient-focused part of the name given to the listening sessions was also a misuse of the words. There were too many areas where these listening sessions were not patient focused.

There are three areas where I think CMS could improve their communication with patients and by doing so improve the way they serve them.

  1. Make it easier for patients to respond – The process for responding, both orally and in written form, was complicated and cumbersome. For instance, the process to register for the listening sessions required you to enter your email address before getting access to the questions or other information. With seniors being the main target of ruthless scammers, the quick request for personal information raises a red flag. All of us encounter multiple instances in the commercial world where the entering of comments is easy and straightforward. I think making it easier to participate would have increased the level of participation in the sessions. While CMS’ capacity per session was 20, the average number of people who actually participated was 11. This, in and of itself, was an indication that the process was a barrier to participation.
  • Be clear as to what is important – Rather than only focusing on the clinical name of the drug, they could have also described what illness it treats. Also, CMS could have outlined what type of information would be most helpful. Even better, hold pre-meetings with patients and patient advocate organizations to get direct input on how the meetings be organized and find out from the advocate organizations what their patients are saying and what questions CMS could ask that would help patients focus on the impact of the medicine on their lives and any barriers to access they might have experienced.

Clearly stating what is important could have also encouraged more diversity in the participants. There was a lack of diversity in both gender and race/ethnicity. Encouraging caregivers to share their point of view would also seem like an important point of view.

It would have also been valuable to have clarity on CMS’ process after the sessions. Clarity was needed to detail how the information gained would be reviewed, how it would be evaluated and, most important, what actions will be taken in response to the patient input? Knowing that there is a process that could result in action is a huge indicator on how important these listening sessions are to CMS.

  • Enable two-way communication – Somehow, some way there has got to be a two-way conversation. I have attended patient-focused sessions with both the Food and Drug Administration (FDA) and CMS. My experience, and those of others I have talked with or read about, has been that the FDA sessions are interactive, and the CMS sessions are not. It seemed that the FDA people asked questions, requested more detailed information, and even followed up with more questions after the session. It would be a great step if CMS would hold post listening session meetings with participants, both patients and those from advocacy organizations, that had key comments and views, to ask questions and give them longer than three minutes to elaborate on their position and experience. That would offer a forum of two-way communication which, I believe, was the most serious deficiency of the listening sessions.   

Where do we go from here? There is a broad range of actions that CMS can take after these listening sessions. While I’m not sure if there is even a requirement for CMS to publicly respond, I can say that I and many others will be watching. The Inflation Reduction Act leaves a great deal of latitude in how the Drug Pricing Negotiation Program is implemented. This latitude offers the chance to have a very positive or very negative affect on the patients who rely on these life changing medicines (to say nothing about all those who could be affected by the damper on innovation that could result from this program).

As you can see, I believe that these listening sessions left a lot to be desired. There just seemed to be so many ways that they could have been more productive. Hopefully, some of these suggestions will be taken seriously. It will be up to CMS to show us how important they perceive these sessions to be and that they are willing to truly have the patient be the center of their focus.

Best, Thair