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Sorry Works! Blog

Making Disclosure A Reality For Healthcare Organizations 

NPSF Report on Consumer Engagement Lacks Consumers!

Last week, the Lucian Leape Institute at the National Patient Safety Foundation (NPSF) released their report on getting consumers more involved in healthcare: "Safety is Personal, Partnering with Patients and Families for the Safest Care."  Link is below. I printed off this report (still a paper guy!), flipped a couple pages, and found the list of folks who helped develop the report.  I counted thirty-seven souls, many smart, high-powered people with lots of letters behind their names, but only found five true consumers: Ilene Corina, Helen Haskell, Linda Kenney, Sue Sheridan, and Deborah Wachenheim.  The rest were folks from the healthcare industry or associated posts in universities, think tanks, or consulting firms.  Five folks out of thirty seven equates to 13 percent.  Only 13 percent!

Given this lousy number - 13 percent! - jaded consumer advocates could not only complain about the lack of representation (13 percent!), but also the quality of said representation.  Now I know each of these five folks and they're all great people, but they are associated with the healthcare industry.  If there were more consumers on this panel maybe this wouldn't be a problem, but when the pickins are slim folks can get overly critical.  For example, Linda Kenney collaborates closely with the healthcare industry, including lots of work on the issue of "2nd victim of medical errors," --- which I believe is great work -- but it makes some consumer advocates absolutely cringe.  "Patients are the only victim of medical errors...let the sloppy doctors and nurses suffer.  Who cares!," jaded advocates often scream.  I know what I'm talking about because I've been on the receiving end of these barbs myself because I too am closely affiliated with the healthcare industry.  I charge hospitals and insurers fees for my speeches and consulting, and sell books and other content to healthcare professionals.   The paucity of consumer representation on this panel opens the report and the sponsoring organization - NPSF - to criticism on multiple fronts.

Unfortunately, what happened with this report is symptomatic of what happens on hospital quality and safety quality committees around the country. Too many hospitals put a patient or two on some committee and congratulate themselves for involving consumers.   Nah!

What I'm trying to say is let's be smart.  You want to engage patients and families, well, let's engage them.  On the national level with efforts such as this report and more importantly in local hospitals.    Don't be afraid to truly engage consumers.

Readers of this space know that I reconciled with the hospital where my brother died from medical errors.  Catholic Health Partners of Cincinnati (CHP), the owners of Jewish Hospital where my brother died, apologized to me and my family, and then really engaged me.  I helped develop their disclosure program and was also invited to participate on a CHP board quality committee.  It was an awesome experience, and I have publicly thanked (and will do so again) Michael Connelly and the rest of the CHP team for everything they've done for me and my family.  My term on the quality committee concluded this past January (two months ago), and my parting advice regarding the quality committee to Michael and the team was to get more consumers on the committee and/or make separate panels for consumers.  In our committee, we had three consumers (including myself) out of a total of 20 to 25 people, the rest being healthcare professionals.  So, again, the consumer representation was about 13 percent.   I was able to contribute because of my background but a lot of stuff was over my head. I felt this was the same with the two other consumers.   Moreover, when you have that many docs and nurses in the room - and three consumers - you can't help but have docs and nurses talk shop, use their terminology, etc.  The dynamic is inherently skewed.   You don't get the full benefit from your consumers.

We can do better....unfortunately the NPSF report missed the mark.  Not only did it lack consumer representation on the panel that assembled the report, but the report didn't push the envelop on getting consumers better represented on safety and quality committees.  To be blunt, a hospital executive with the standard one or two patients on some committee could read this report and say to him or herselves, "Hey, we've got consumer involvement!"  Nah!

Moreover, the report lacked good stories or examples to help folks.  Stories and concrete examples are so important.   This report was simply a laundry list of ideas, many of which the panel concedes are not new.  It was a rehash and will soon be forgotten.

Finally, what I found totally lacking in the report was the business case.  How is this going to help the bottom line?  Every idea that can be implemented in a hospital has to pass the smell test of the CFO.  And if all we got is "It's the right thing to do!" that ain't gonna cut it for the CFO.  Your typical CFO believes that simply keeping a hospital open is enough of the "right thing to do" when his or her financially driven mind knows that the capital required to own and operate a hospital could make a lot more money elsewhere (versus the low margin business known as healthcare).   There is an absolute business case for patient safety as well as disclosure, and we need to stop being embarrassed about making that business case.  Show the ROI not only in human terms but also in dollars and cents.

Here is the link for the NPSF report...judge for yourself: