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.

Thursday, September 20, 2012

Trustworthy websites for medical information

Someone sent this great question to me earlier today:

How do you know which web sites are legit?

That's always a tough call, but here are some of the sites that I rely on:
  • National disease organizations, like the National Cancer Foundation

  • Info from NIH websites (like NIAMS). You can find a full list of government health-related websites here:

  • Do an overall search on your topic at

  • Med school or teaching-hospital sites can be helpful, like:
    Mayo Clinic:
    Johns Hopkins:

  • eMedicine recently merged with Medscape, which created this site:  (If you try to look up BD on this site, you have to enter it as "Behcet" and not "Behcet's"... otherwise, no info shows up.)

  • PubMed lets you search for medical journal articles that have been published on the topic you're interested in. Here's the link, although it sometimes takes patience (and/or trial-and-error) to find the exact info you need. Here's the link:

  •  UpToDate offers a lot of excellent info in two different formats: for patients (at ), and for doctors (at
    The patient side is free, but it doesn't go into a lot of detail. If you want to get your hands on the more-detailed info that doctors see, you can, but you have to pay for it. They have a 7-day all-access pass for $19.95, or a 30-day pass for $44.95. What makes UpToDate so good is that it does regular updates of all its content, and it summarizes all of the most recent research on the topic you're looking for. It also provides references.

  • WebMD can be helpful, but you have to look carefully to make sure you're not clicking on one of the product ads, which may be disguised as the info you're looking for. Look for VERY small lettering that will say ADVERTISEMENT.

I'm sure I've left some valuable ones off the list, but this is what I remember off the top
of my head. Other websites can be a crapshoot. Some are good, but a lot are bad, with
quite a bit of misinformation. It helps if the website has content that's been reviewed by a doctor or medical panel, and has a date indicating when the info was last updated.

Happy hunting!

Friday, March 2, 2012

A quick update

I've finally been able to create permanent links -- that actually work this time -- to the abstracts (summaries) of all published research about Behcet's that appears on PubMed. There are approximately 8,000 articles as of today. There's also a permanent link to approximately 1,000 FREE research articles that are available in full, online.

You can see and use all of my RSS research feeds (updated daily) and permanent research links by looking on the right-hand side of the EssentialBehcets blog.

If you're a subscriber to this site, there's still no way for my emailed updates to include the latest RSS feed results within the email. Sorry! I hope that will change at some point. For now, you'll need to bookmark this site and check back on a regular basis.

If you're a first-time visitor, don't forget to check my blog archives. There are 50+ posts on a variety of Behcet's-related topics.

Friday, February 3, 2012

And one more thing....

Here's a link to Behcet's-related research that was presented at the most recent U.S. rheumatology conference, the ACR/AHRP Annual Scientific Conference in Chicago (November 2011):
28 Behcet's abstracts

Also, I've just added a link on the right-hand side of my blog; it will take you to ALL of the published research about Behcet's that's listed on PubMed (but only articles that include "Behcet" or "Behcet's" in the title). As of today, there are 5700+ articles listed. Assuming that I've done the settings correctly, it should be up-to-date at all times.

If you want to push the envelope and use this search to look at all FREE published Behcet's articles that you can read online, go to the upper right corner of the PubMed window, and click on "Free Full Text."

Happy reading!

(For email subscribers to this blog post, you can reach the PubMed research links by going to EssentialBehcets )

Saturday, January 28, 2012

Out of the loop for too long...

I've been MIA for the last few months, and I'm sorry about that. My day job has finally caught up with me. There's too much to do and way too little time.

So I'm trying to make a quick, fresh start here -- an easier-to-read blog layout, with the addition of daily updates that show the most recently-published Behcet's research abstracts and FREE articles that are available online. You should see these listings change every day in the right-hand column, with links to the abstracts/articles. A big benefit is that I don't have to do the updating myself... both listings are RSS feeds that come direct from PubMed. Go to the right-hand column to subscribe to this blog by email or RSS.

UPDATE: Unfortunately, PubMed's links for new articles and abstracts won't show up in emails that go to this blog's subscribers. Until I can find a work-around, please bookmark this blog and return to it to check for the daily update.


Ongoing Rare Disease Study

Researchers at Keck Graduate Institute in Claremont, California, are studying serum samples in an attempt to identify and characterize new diagnostic biomarkers of cells, proteins and/or nucleic acids of rare diseases. The study is funded in part by a grant from the National Science Foundation. The National Organization of Rare Disorders (NORD) is a partner and plays an advisory role. The project is designed to provide a better understanding of the similarities and differences in the patients of rare disease populations and to ultimately help select specific forms of treatment. Healthy family members may participate as part of the control group.

At this time, the study is recruiting Behcet's patients and their healthy family members living in the United States. Serum samples from Behcet's patients will be obtained during the course of the patient's next routine lab work procedures as scheduled through their primary physician. The samples will then be sent to the KGI lab in California, at no cost to patients.

If interested in participating, please review the Consent Form before calling and leaving a message on the ABDA hotline at (800) 723-4238 or at (631) 656-0537. Mirta will call you back with more details on how to get involved.

The American Behcet's Disease Association has also set up partnerships with a couple of organizations:

1) The CoRDS registry (Coordination of Rare Diseases at Sanford:

The Coordination of Rare Diseases At Sanford (CoRDS) is a registry at Sanford Research in Sioux Falls, SD. It collects information on patients diagnosed with a rare disease to help accelerate research into rare diseases. The registry was developed because access to information about rare diseases presents a challenge to researchers, patients and their families. CoRDS provides a way for researchers conducting clinical trials to search for individuals who would be able to participate in their clinical trial, and keeps individuals aware of the opportunities to participate in clinical trials.

If you know of anyone who would be interested in enrolling, they may send their contact information to CoRDS personnel via email or by phone at 605-312-6413. Anyone can learn more about CoRDS at

2) Eurodis

EURORDIS is a non-governmental patient-driven alliance of patient organizations representing more than 492 rare diseases patient organizations in over 46 countries, and currently translates information in seven (7) languages. To learn more, click on:
To establish a free membership:

Since the website is translated in different languages, look in the upper right area of webpage and find the “Language” area. You can then click on the language you speak/read, i.e., EN (English).
Then, select Behcet’s Disease/Syndrome under the “Green RareConnect” area located on the lower left side of the web page.

Email subscribers: Check for daily research updates --