Your help needed for patient advisory committee!

[Momof4]

Hello all! I am working on a patient advisory group to improve hernia care by including patient perspectives and expectations. I would love to hear from everyone about how your expectations for hernia surgery differed from the reality of your hernia repair. Also, what factors a patient considers when deciding to have surgery and if afterward, the surgery is deemed a success. I know that different outcome measures exist for doctor vs patient when it come to considering the hernia surgery a success! This is important information for physicians and may help with discussions before surgery and follow up care after. The ACHQC is looking to provide more information for doctors and patients so that expectations from both, patient and physician are better aligned. Any input you provide is appreciated. I will keep you up to date!

[Good intentions]

Isn’t there a survey form associated with this effort? What, exactly, are you looking for? What time-frame is the effort looking at? Years, months, weeks?

https://www.arbormetrix.com/results/americas-hernia-society-quality-collaborative

“ArborMetrix dynamically benchmarks performance in real-time, which is crucial for tracking the impact of quality improvement interventions. This has allowed AHSQC to improve the quality and cost-effectiveness of hernia repair by providing surgeons with immediate, risk-stratified metrics to determine the best procedure for an individual patient based on various factors.”

[Momof4]

The collaborative is now the Abdominal Core Health Quality Collaborative, ACHQC. There is no official form associated. The patient advocacy committee is discussing several topics for presentation at the Summit, which has been made totally virtual and spread out over several months. One of the topics to be discussed in June, by the Patient Advocacy Committee, is focused on the difference in physician vs patient success measures and expectations. Unfortunately, I have lots of experiences myself to go on but I would also like to hear other patients’ perspectives about their expectations for hernia surgery success. The standards used to measure success from a physician and patient viewpoint are very different. There is lots of good information on the ACHQC site and we are hoping to add even more information, but from the patient perspective. Thanks for your interest!

[Good intentions]

Thanks for the reply Momof4, and for getting involved.

Here are some relevant links, below, but the whole site is worth looking through.

There’s a video if you click on “How it works”. I copied the youtube link to it also. It’s worth watching to get a feel for how deep and how far they plan to go. The map is interactive, you can find the places that have signed up so far.

https://www.achqc.org/

All of the “Partners” are involved in, and benefit from, mesh implantation. Foxes and hens. Trust but verify. Where are the objective, non-conflicted partners? The CDC, NIH, or FDA? I don’t really see any effort to identify long-term results, or quality of life results.

https://www.achqc.org/faqs/achqc-foundation-1

Finally, how do the results from the pain clinics or urology clinics get associated with the repair and device? There is a mention of longer-term follow-ups, a short nine question survey, but the focus of the effort seems to be the one month follow-up, and “readmission”. Readmission is for physically manifested problems, not pain problems. They should get the pain clinics and others involved, if they are focused on patient welfare.

Good luck Momof4. Sorry to be cynical.

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