History, Tidbits of Interest, and True Confessions about Patient Advocacy Certification

Today’s post is deeply personal, the culmination of 5-1/2 years of work, thousands of hours of donated time and effort, and my hopes, emotions, and dreams for this profession of health and patient advocacy that I believe is so vital to the future of safe, effective, and fair patienthood.

It regards the launch in mid-March (2018) of Patient Advocate Certification from the PACB (Patient Advocate Certification Board), how we got there, my appreciation and deep respect for the hard work of my fellow PACBoard members, and the immense amount of pride I continue to feel about being a part of the Board, and my role in bringing certification to fruition as one member of the PACB.

It also includes some frustration and some lows that went with the highs….

It’s my personal take on history and true confessions all rolled into one.

History

In September 2012, a group of 25+ interested parties came together to explore the possibility of certification development. Called together by two individuals involved in advocacy, author Jari Holland Buck, and Deb O’Connell from the University of Toledo, they represented advocates, educational institutions, and professional organizations.

In the first few months, as we got to know each other, the big picture was discussed. Goals were framed. Eventually a steering committee was elected – and thus began the work of certification development.

Thinking back to those early days (and many days since), it’s kind of a miracle that we ever completed the certification. As we got started there were huge personalities involved, including some who didn’t like not being in charge. (Yes, that’s a double negative – so read it again!)

I was unpopular from the get-go which isn’t an unusual position for me (strong leaders with strong personalities are to be avoided at all costs!) but realized that my best contribution could be my technical abilities, as in, building the online structures for communications – the website, the document repository, etc. So, I volunteered my time as support personnel – NOT as voting member of the Board. Otherwise, I might not be writing this post today.

Work started, stalled, started again, stalled… until one day in 2015, when half the Board resigned their positions. They were frustrated. They felt as if we were spinning our wheels. They didn’t like the direction we were taking – and poof! They were gone. (I’m still sorry they left. Fortunately I have retained my relationship with each – they are colleagues and friends.)

For the rest of us, in mourning and shock on the one hand, and angry on the other, their resignations became the kick-in-the-backside we still-involved Board members needed. Now we were focused, driven, and out to prove that yes – the certification could be completed!

We found new Board members to join us, and like a sling-shot pulled back as far as it can go, then released – we flew through the rest of the certification development, more determined than ever to do it well, and right.

And so we did. (This is also the point where I became a voting member of the Board.)

Over the next few years, we continued moving forward but with some external-to-the-process challenges:

• One Board member was hit by a car on the streets of New York City.
• Another was diagnosed with a brain tumor.
• One lost his mother and his best friend within days of each other.
• I moved 1,200 miles, including moving APHA offices. But at least I stayed in the US… because
• Another Board member moved out of the country!

As we learned over and over again – sometimes life gets in the way.

People left the Board. New people joined the Board. But we maintained our forward momentum. We worked, we argued, we agreed, we disagreed. We came to consensus except when we didn’t, then went back to the drawing board. VERY importantly – we stayed in touch with all of you, our certification audience – to ask opinions and input on each important decision and document developed along the way, a crucial task for making sure YOU all thought we were on the right track.

Finally, we announced in September 2017 that the first certification exam would be offered in March of this year.

And so it was.

We did it!

We crossed the “certification launch finish line!”

Of the many things I have accomplished in my lifetime, participation with this Board, and completion of the certification are right there near the top. I know in my head and heart that lives will be saved, and quality-of-lives will be improved, because of this work. I am as proud of this contribution as I am of anything in my life – ever. (Pause… Breathe in… Exhale…. Honestly, this is so emotional. Like each time I receive an email or read a post from someone who took the first exam, I choke up.)

Tidbits of Interest

• In the “did you know?” category: (this often surprises people) – that the overarching goal of all this work has been to create a certification that would serve PATIENTS – not advocates! We focused on developing criteria that patients could rely on to help them find only the very best, most patient-focused, effective help for themselves. The fact that the credential was built for advocates to earn is only the means to the end of serving patients.
• The feedback from test-takers has been very positive, although citing a few issues to address. For the most part, exam takers felt the exam was difficult and challenging, but fair. Some complained that there were too many medical questions, or some questions were worded oddly. One question was about Medicare, and we know (now!) it did not have a correct answer! Soon the Board will meet with the testing company to review it all, from the registration process to the exam questions, to improve it for the next time around. (No worries – if you got that Medicare question wrong, it won’t be counted against you.)
• There were some major expenses along the way – all bootstrapped by those of us on the Board. The cost of incorporating, the cost of software and website building and maintenance, the cost of getting started with our work with the testing company… All investments on the parts of those of us who believed in it so strongly, that we were willing to put our money where our driven hearts were.
• OMG – the time investment. Personally, I estimate that I’ve spent 2,000+ hours working on certification since 2012 (much of it due to that support work, mentioned above). Other Board members put in their thousands of hours, too. This is true dedication.
• Much of the work was completed by a handful of important Task Forces. You can see the names of everyone who participated here. In all, among the Board members and Task Force participants, there must have been 20,000 or more donated / volunteer hours of time. Please thank them!
• The biggest disagreement the Board had about earning certification surrounded Eligibility. While we wanted to be very strict about WHO would be eligible to sit for the exam, we couldn’t justify that strictness. We knew the backgrounds of many of the folks who are already successful advocates. Review of their backgrounds revealed no minimal level of education or experience that improved their advocacy. They all started somewhere with no experience, right? Their educational backgrounds were all over the map…. Thus, with no other benchmark, we decided we would leave it up to the test-takers to inform any minimums we might set in the future.
• In the “I don’t get it” category: The work of the PACBoard, and the resulting certification, have not been supported by everyone in the advocacy community. In particular, one major organization STILL has not informed its members about the existence of the credential or the exam. I have asked them about this repeatedly, and am simply told “we haven’t had a chance to discuss it” – which I know is not true. (Remember – it’s been 5-1/2 years.) My personal opinion is that no information has been shared with its members because there is a conflict-of-interest at the top. That certainly does not serve its members. We’ll see over time whether this situation changes.
• Of all the decision-making groups I’ve ever been part of (and I’m including businesses and organizations I worked for in my previous employed life) I have never had such a high regard for my fellow project workers. One reason is because we have always relied on transparency and honest debate to inform decisions.
• I have heard from a handful of educational groups that they are now putting together BCPA courses to offer future exam takers – exactly what we hoped, and expected, would happen. All good!

So there you go – a bit long-winded, but history, tidbits, and true confessions as promised.

For those of you who pioneered taking the exam – thank you! Thank you for believing in our work to the extent you were willing to plunk down your money, and spend your time in preparation. We’re appreciative (and relieved!) and wish for you passing scores! We can’t wait to share your names with the patients who need you!

For those of you who will become certified in the future – I hope you find this post and learn a little about the history of your chosen profession. It’s probably not too different from the historical certification facts of other professions – except that this one is OURs.

And to the patients of the future who are lucky enough to work with a BCPA (Board Certified Patient Advocate) – please know they worked hard to become certified – for YOU.

Learn more about the Patient Advocate Certification Board

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