Beyond individualized care: How the Endofound is making a difference

Beyond individualized care: How the Endofound is making a difference

Theresa Davidson, MPH, MEd
Nina Baker, MPH
The Brooklyn Latin School

Beyond individualized care: How Endofound is making a difference

Patient Awareness Day
The Lifecycle of Endometriosis: From Diagnosis to Coping with Disease
Sunday April 17, 2016
Lenox Hill Hospital, Einhorn Auditorium

Thank you all very much again for being here. I have to say we, over the course of my job we interface with a lot of patients and health care providers over the year and this is by far my favorite day because we get all of you in one place at one time. Those of you out there watching you as well, you are definitely invited and included. We are so happy that you could be here. So many of you have contributed to Endofound either by giving us your volunteer time or by supporting us financially and I want to take a few minutes to talk about the collective change that we have been able to effect, particularly over the last year. Some of you know that the Endofound mission is three pronged in nature; we work on advocacy, we work on funding research and we work to educate both the general public and the medical community. I am going to walk through those three things briefly and talk about the work again that you guys have helped to contribute in 2015.

With advocacy it is clear that there are major issues. We had a round of applause after an insurance question. I want to just say we absolutely hear you. Our phone rings off the hook all the time and it is wonderful because people are, as Jhumka was talking about, angry and making their voices heard and we are absolutely trying to make strides to effect change. It is difficult because it is systemic as Dr. Seckin mentioned earlier. It is a big machine that we are fighting. But most recently some of you saw Padma was able to secure a full day of briefings on Capitol Hill where she was able to hold meetings with very influential law makers on both sides of the aisle. As a result of that one full day of tremendous meetings we have been able to have a great working relationship, starting to build working relationships with a lot of federal offices.

Inside your bags today you will find a reference sheet that can help navigate some of those choppy insurance waters. It is just a starting point but it is something that people can hopefully use because we do not need to re-invent the wheel, there are people that are working to help women deal with issues when they feel like their insurance companies are not treating them fairly. At least at this starting point we can hope to point you in the right direction of who you need to talk to. On the research side you have just heard from the experts about what is going on; Dr. Gupta, Dr. Al-Haddad and Dr. Gregersen about what is happening. We are so excited to continue helping to fund those investigations and I am really excited to see what results are yielded from that.

As far as education, I will start with one year ago almost to the day, we sat in this very room and held a three-day conference much like this. It started out with Patient Awareness Day. We had hopefully lots of you back again. Joining us at last year’s conference was a focus on Early Diagnosis, Ending Endometriosis Starts at the Beginning. Like I mentioned earlier it really is the core tenet and value of Endofound so we try to focus on that a lot. We had international faculty coming in, it was really a wonderful day. If any of you are looking for those resources online we have a video gallery where you can find everything from last year’s conference and you can always reach out to me or any of the staff in the back there if you have questions about that. For education the other main part of our education arm is our EMPOWR project. For those of you who are not aware of it, it is an adolescent community and school based program where we go into schools and spend 45 minutes talking to both girls and boys about the signs and symptoms of endometriosis. We also try to empower young people to, hence the name, to take, be empowered to serve as advocates for their own health and to go out there because as we have seen and heard from all the women in this room, it can be very difficult to get a physician to listen to you when you feel like something is wrong and your questions are not being answered. We try to get both the boys and the girls to understand that as they are obviously moving from a delicate stage of maybe seeing a pediatrician under the guidance of their parents into going off on their own.

The EMPOWR project has been running, it will be three years in October thanks in large part to the New York State Department of Health and funding from them. Thus far we have educated almost 14,000 adolescents. We have visited 125 sites throughout the state and given 576 presentations. We worked really hard over last summer to revise our program to make it even more robust and dynamic. I invite anyone in this room to come witness one at any point in time, you are welcome. We would love to have you. We often have volunteers who come and share their story. It is really wonderful to have a face who can talk about the disease. Some of our educators are patients themselves but others are not so please let us know if you would be interested in that.

We use a myriad of assessments to determine the strength of the program and its efficacy. One of the most important tools that we have is a pre and post-test. As I said, across the 14,000 adolescents that we have educated so far our pre-test scores have remained pretty steady. It has actually been pretty amazing it has only changed by a couple of percentage points, a couple of tenths of a percentage point actually. About 30 percent is what students walk in knowing and we judge that on a range of things just about basic information. Again, across those 14,000 they walk out with an average of knowledge base of about 91.5 percent. At least from those 45 minutes we feel like we are doing a really good job of relaying information that is really critical to having someone understand what those symptoms look like to then hopefully taking the next step of actually seeking care should they need to.

We have presented in Manhattan, Queens, Brooklyn, the Bronx, Nassau, Suffolk, Westchester, Albany, Binghamton, Syracuse, Ithaca and Rochester. And those all sound like a lot of great New York places, which they are. However, we are really excited today to make the announcement that we are bringing this program to Scale. We have been working for the last nine months to develop a new implementation phase we are calling it the “Endo-EduKit”. This is a one-stop shop if you will; a couple of pieces of paper that absolutely any volunteer, any teacher can pick up and implement in their own classroom or church or community based organization. Wherever adolescents congregate and have about 45 minutes to listen. We are hoping that people can get out there and spread that word. We have been working to pilot this EduKit for the last three months. It has been really successful we are still refining the tools. But, by the fall of 2016 we are going for a full rollout. And this is where you come in.

We need your help. We need you to tell us who the teachers are that would be interested in this. Tell us how we can get into your church. You guys have the local connections. We do not. We have the tools to give you, you give us the people and the audience and we will deliver it. This is going to be, we hope, a really influential instrument to really raising awareness on much bigger numbers.

As you can imagine 14,000 students over three years, or two and a half years is a lot but it is every time a presenter going out. It is subway fare, it is gas, etc. it is expensive so this really supposed to be an easy way for us to get the message to places that we cannot physically reach. And since EMPOWR started in 2013 we have had that call. You know, there is social media, there are phones, there are emails, people have been saying “when are you going to bring this to my state?” and now we finally have an answer. We are really excited about that and cannot wait to bring it to you.

Again, our staff is in the back. I am here. If you want talk about that please, please come approach us. There is also an email I can give you directly for that program. I just want to reiterate what everyone, the researchers said earlier one of the other major ways you can get involved and helping is just your participation in research. ROSE is back there. Go talk to them. Give them your sample.

At this point I am going to bring up Nina Baker, who is our education outreach coordinator and works with the EMPOWR project and she is going to talk to you about the EMPOWR award.

Nina Baker: Thank you. Again, my name is Nina Baker and I am an education and outreach coordinator with Endofound. It is with great pleasure, today, that I present the second annual EMPOWR award to the Brooklyn Latin School. The EMPOWR award is conferred upon an institution that has demonstrated a commitment to prioritizing their students’ health through education. With the devotion of their health teacher, Ms. Jenna Monahan, the EMPOWR project has been able to educate over 40 percent of the Brooklyn Latin School’s student body in just over one year.

I have had the pleasure of personally presenting the EMPOWR project to over 85 percent of the students reached at the Brooklyn Latin School. I can say from experience that the students at this school have always been very engaged and eager with questions about endometriosis to facilitate discussion.

During our post-test we ask what is the most important fact that you learned today? Some answers straight from the Brooklyn Latin School are: “Periods should not get in the way of your normal life”; as well as “This is a significant disease that can affect me and I should be aware of the symptoms” and also “Women do not have to suffer in silence”. And finally, from a 15-year-old male student, “Even though I am a boy I can still help by spreading the word about endo to my friends and family”.

Over the next year we will continue to work with Ms. Monahan to educate more students eventually educating every student at the Brooklyn Latin School about endometriosis through the EMPOWR project. We at Endofound are excited about our continued partnership with their school including the piloting of our new EduKit with their classrooms next month.

Now I would like to present the second annual EMPOWR award to the Brooklyn Latin School. Accepting the award today is the health teacher, Jenna Monahan, and student representatives Isabella Ramirez and Benjamin Lo. Please come up.

Isabella Ramirez: Hello, the EMPOWR project has started a conversation about endometriosis and brought information to the next generation, our generation. This is important because it is through this information that young girls can recognize if they do suffer from these symptoms and go out and get the diagnosis necessary and take the next steps to get help and live happier lives.

Benjamin Lo: With this national campaign young people can advocate for their health as well as the health of others through sharing what they have learned about endometriosis with those around them through spreading awareness and improving the diagnosis.

Jenna Monahan: On behalf of the Brooklyn Latin School we are honored and privileged to accept this award today from the Endometriosis Foundation of America and the EMPOWR project. EMPOWR’s Nina Baker has shared her passion and wealth of knowledge to our students at the Brooklyn Latin School for the past two years and we look forward to continuing our partnership with EMPOWR to raise awareness for endometriosis. Thank you.