Wednesday, December 19, 2012

Hitting the road for patient advocacy

How often do you get a holiday present this perfect? Thanks to the WEGO Health Press Corps, I received a free registration for the 2nd Annual Patient Advocate Conference, run by the Professional Patient Advocate Institute (PPAI). The meeting took place in Florida in December…a BIG win for someone from the frozen north! Oh – and did I mention that becoming an official patient advocate is one of my career goals? That I hope to use knowledge from this conference—and other sources—to become a consultant for newly-diagnosed people with Behcet’s disease? It would be a natural extension of my 30 years of personal experience with Behcet's and other BDers.

In return for this learning opportunity, I was asked to tweet, blog, vlog, and/or post to spread the word about WEGO Health, its Press Corps, and the conference that I attended. No problem: I came back so stoked from the experience that I’m thrilled to share the wealth. If you have Twitter access, you can also check my tweets (@jzeis) about the conference.

So what did I learn?

It's a jungle out there

For one thing, I learned that patient advocacy is an emerging field, but that’s not to say it’s a slowly emerging field. Far from it. Training opportunities for independent and hospital-based advocates are crawling out of the proverbial woodwork: PPAI runs day-long certificate workshops, but there are many other non-PPAI training options, too. One of the conference speakers, Trisha Torrey of the Alliance of Professional Health Advocates, offers a list of learning venues on her blog:

Since there are no national certification standards for this field (yet), I expect the training list will continue to grow.

What can a patient advocate do for you?

More than you’d think. As the healthcare environment continues to change, you can’t swing a dead cat without running into an article/blog/website about patient empowerment. Yes, we’re in the waning days of doctors making healthcare decisions on our behalf. And yes, there is more pressure on patients to use the Internet, to learn about their diagnoses, and to ask questions. We’d like to think that’s a positive step forward—but face it, it’s not for everyone. The healthcare system is downright confusing and intimidating for a lot of people. That’s where patient advocates can step in and fill the void: they can help people have better outcomes by finding the answers and the resources that patients aren’t able to find for themselves—and they can explain that information in terms that can be easily understood. Ultimately, better communication between patients and their healthcare providers is the advocate’s raison d’etre.

The conference

The Patient Advocate Conference was divided into two separate learning tracks: Independent and Hospital. Other than Trisha Torrey’s opening keynote speech and a joint luncheon presentation given by Sona Mehring, the Founder and CEO of CaringBridge, our groups followed separate agendas. As planned, I concentrated on the “Independent” track presentations.

     The "Independent" track topics were:

      "Hospital" topics included:

Best of the best

Over the years, I’ve been to a lot of conferences: the good, the bad, and the flat-out dangerous. But this is the first I’ve attended where I didn’t look at my watch. Not once. The excitement in the sessions was palpable: we know that we’re the advance guard in a new field. The presentations were relevant, and they were chock full of information and tips from both business AND personal perspectives. Phenomenal.

My only regret? That I didn’t sign up for the PPAI Certificate Workshop that took place the day before the conference. But now there’s something else to look forward to.

Kudos and thanks again to WEGO Health for this great opportunity.