Saturday, October 30, 2010

Women Helping Women: Breast Health Collaborative of Texas

Take a handful of determined Texas women who refused to accept the terms "no access" and "uninsured," give them a little more than five years and you have the Breast Health Collaborative of Texas, a public-private partnership that works to assure that any woman with breast cancer in Texas has access to both detection and, when necessary, treatment.

Frances Arzu, founder of Pink Phuree BCS
Dragon Boat Team and "Harvey," a fund-raising
ribbon & brainchild of Susan Rathke.
That the group has been recognized both nationally and internationally comes as no surprise to me, especially after attending the organization's sixth (my second) Breast Health Summit this past week in Houston.

All the big players from the Houston Medical Center are members but a key factor of the Collaborative's effectiveness is that it may be the only place where various advocacy groups -- the people actually on the front lines with the underserved -- are members as well, from grass roots advocates for boat people, Asian, Afro-American and Latina women to the Young Survival Coalition, M.D. Anderson, Memorial Herman, Komen-Houston as well as well as professors from the University of Texas Health Science Center and School of Public Health.  All good.

Content?  The program included a number of animated and powerful panels and talks on survivorship as well as decoding health care reform and the role patient navigators will play.  During a break-out session Venus Gines (who could ever forget her name?) explained some of the Latina woman's barriers to screening and how Dia De La Mujer Latina works not against -- but through-- those fears with community-based promatoras and "health fiestas." These programs give me hope and enthusiasm for extending access one step further: from the fiestas to phone applications from web-based programs.

This is point where we as "epatients" and digital health advocates have work to do. Understanding of social media and its potential in addressing health care was fairly low in this group. More than one speaker placed blogs (like this one or  Brenda Coffee's) on the same playing field as Farmville, not as another avenue for improving access or literacy. There's much education to do on all fronts to keep the playing fields equal. If groups advocating for the underserved are missing connections via social media then we haven't yet fully completed the circle.

But thanks to the Breast Health Collaborative of Texas, we can at least contemplate what going full circle might truly mean for underserved women and their families.

Consider this example:  A working mother of three gets a call one morning from her sister, who's standing in a line for a mammogram at a health fiesta in Corpus Christi. She picks up her mother, brother and sister-in-law and off they go. There's music, food, and a place for the children to play. All four women -- who have never been screened -- now have baseline mammograms. But the other brother-in-law, the one she brought back later in the afternoon?  He was diagnosed, and successfully treated, for an early stage breast cancer.

If we add a social media component to this model an app is in place as a reminder with the location and date of  next year's fair. This data, along with any test results, are stored as EMR in a secure portal that the patient can access. If she wants, she can upload additional information from the breast health portal to her phone.*** All the information is one place for any further referral if necessary, and an entire network of people now have an entry point to the health care system.  

That works for me. Question:  do you know where to refer a friend without insurance for breast and cervical cancer screening?  This is what the Breast Health Collaborative does for women in Texas.

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**These examples are modified from actual cases presented during a break-out session.  One of the women who attended a fiesta screening program returned with her husband, who'd been too embarrassed to have a lump he'd found in his own breast examined. In the Latina community, involving the entire family is critical.

***HIPPA compliant.  Today @chiah posted an important discussion on privacy and electronic health records http://bit.ly/b2YvbB.  

Additional Information:
Breast Cancer Info:  Medline 
The Rose :  Breast health services -- Harris County, Texas
Lone Star Clinic: Breast health services -- Montgomery County, Texas
St. Lukes Episcopal Health Charities Breast Cancer Portal (info on breast health services across Texas)
Breast Cancer Trials 

3 comments:

Nancy said...

Jody, Thanks for bringing to our attention again the needs of uninsured women and their families. I hate how they are so often forgotten. This sounds like a wonderful program.
www.nancyspoint.com

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