Where Advocacy Rubber (Data) Meets the Road – The CHCAO Report

cover image - CHACO report Critical Role
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(Not sure what CHCAO is? See below*…)

Health care and patient advocates convened in September for a conference about – advocacy! I did not attend, but am told that those who did felt well served by the many speakers, topics, and (best of all, perhaps) networking over several days.

During one conference session, CHCAO shared the results of its recent survey, results that should be of interest to ALL advocates – and the healthcare system in general. Entitled The Critical Role of Patient and Health Care Advocates: A Special Report, it’s comprised of 28 pages of data and conclusions that we, as independent advocates, can use.

Having usable data is such a positive step! So much in business can or should be determined by data! But we’ve never had solid, usable data like this before. With thanks to CHCAO, not only does this report share newly acquired, current data, it actually helps to create some data itself.

The Survey

The survey results, acquired in 2022, resulted from input from patients and caregivers (188), advocates (262), and providers (91). Specifically, the survey was intended to measure the effects of advocacy on a patient’s journey through the healthcare system; how it was perceived, results, attitudes.

The report, now shared with the public, provides an overview of survey responses and the conclusions CHCAO has drawn from those responses.

Important to note: The advocates who submitted answers to the survey were not all independent advocates. According to the report, “These advocates may work independently, in medical settings, or on behalf of communities or disease-specific populations across organizations and agencies.” This is further explained on page 15 of the report.

Contents and Conclusions

Short of providing a comprehensive rehash of this report – because it’s that interesting! – here are just a few of the explanations, conclusions and data points that stood out to me, as someone who has been involved in promoting all-things-independent-advocacy since the beginning (2007).

CHACO special report 2023
  • Among patients surveyed, 92% agreed that their care was impacted by working with an advocate
  • Among advocates: 98% felt their patients/clients were more educated, satisfied, and confident in their ability to navigate health issues
  • Among personnel and providers: 98% felt working with an advocate had an impact on patient care
  • Among advocates: most were hired for care coordination (57%) followed closely by decision support (54%). Clinical trials, end of life care, and healthy or solo aging were the least of the reasons cited.
  • Among providers: 92% stated they believe that the presence of an advocate has positive effect on patients and decreases their staff burden
  • Among patients: 55% of patients say they prefer to work with a a board certified patient advocate. 60% of providers say certification positively affects their opinion of the advocates’ quality of support.
  • Of particular interest are the Case Studies and Themes provided in the report. This information is GOLD!

Notes on Omitted Information or Conclusions

“Omitted” means it wasn’t measured or that no conclusion was drawn. There could be many reasons for this – and calling it “omitted” is by no means a negative judgment. I’m making these points because someone might ask you about it. If they do, your simple reply would be that it wasn’t measured.

  • Note that the data regarding the impact of care (see above) – this doesn’t say it was GOOD care or BAD care or even IMPROVED care. It just claims an impact. Later in the report conclusions you’ll find reports on positives vs negatives.
  • Note about the patient survey data (see above) where 92% said their care was impacted – I asked Heidi Kummer, Chair of the PACBoard and one of the people who worked on the survey and report, whether there was any conclusion drawn about the 8% of people who were NOT impacted. Did CHCAO correlate that data with the patients who worked with independent – vs – non-independent (worked for hospitals, pharma, or other) organizations? They did not, but Heidi felt it might be important to look at to see if they can draw conclusions from their survey data.

I encourage you to read the entire report, because you may find other pieces of data or information that are even more interesting to you.

Ways you can use the data and report in your advocacy or care management practice:

Important: Be sure you always attribute any content you share from this report to CHCAO.

Off the top of my head; use this data and these conclusions:

  • In your marketing materials, including your website.
  • In public speaking/presentations to any group.
  • On social media, with all groups who play a role in healthcare (including patients).
  • In conversations, whether or not they are focused on advocacy. (You could even use these points as conversation starters!)
  • re: Certification – a clear majority of patients and providers feel that an advocate’s certification reflects a better quality of service. If you are not yet certified, give it strong consideration.
  • All advocates should spend some time with the Case Studies found on pages 16 to 19.

What data or conclusions did you find most interesting?

Please share in COMMENTS below.

*CHCAO (pronounced “CHI-cow” according to Rachel Westlake who led its development. She explained that the pronounciation reminds her of the background music in the movie Ferris Bueller’s Day Off 🙂 ) CHCAO is the acronym for the Coalition of Health Care Advocacy Organizations. CHCAO’s membership is comprised of the leaders of many advocacy organizations who study big picture concepts in independent advocacy. Learn more about CHCAO here.

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Content Authenticity Declaration

100% of this post was written by me, a human being. When there is AI (Artificial Intelligence) generated content, it will always be disclosed.

1 thought on “Where Advocacy Rubber (Data) Meets the Road – The CHCAO Report”

  1. Darlene Christy

    Trisha, thank you so much for this informative article! Being a brand new Board Certified Patient Advocate fresh off the press, this is very encouraging to see how the value of patient advocacy as a whole is being embraced. A few short years ago, I have no idea of advocacy as a profession, even though I had been advocating for loved ones for years. We’ve got lots of work ahead, but we’ve come a long way and I would just like to thank YOU for your dedication to the industry and for the pathway and education you provide for myself and other advocates. You are a blessing!

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Trisha Torrey
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