Our broken healthcare system defeats even the most empowered patients

June 3, 2013 6:57 am by Veronica Combs | 24 Comments MedCity News

Jess Jacobs and her paper medical records

Jess Jacobs and Donna Cryer are experts on the healthcare system — professionally and personally.

Jacobs has postural orthostatic tachycardia syndrome, and describes it best in her own words:

I have an idiopathic condition. It lies somewhere between the heart, autonomic nervous system, and mind. It's a veritable no-mans land of drugs and specialists where there's no cure and very little understanding.
I'm healthy enough to have a day job advising the people that chart the course of American health policy.

Cryer was diagnosed with IBD as a teen-ager and received a liver transplant in her twenties. She has a law degree and has worked with the FDA, PCORI, and the NIH. She runs her own consulting company to help pharmaceutical, biotech, and diagnostic firms work with patients and physicians.

Both women spoke Sunday at the XXinHealth event in Washington DC and both told absolutely awful stories of hospital stays and completely uncoordinated care.

Cryer said that once she was put in a makeshift room with no bathroom. It was divided by a curtain from a resident break room. As she lay in bed, she could hear them talking about patients.
"The patient side of me thought, 'I'm immuno-suppressed in three ways,' and the lawyer side of me thought, 'HIPAA violations,'" she said.
She also knew that her doctor was in the hospital but hadn't stopped by to see her.
"Part of me was hurt, but another part knew that she was doing scopes, which are reimbursed at a higher rate than complex consults," she said.

Jacobs also has the background to assess her personal hospital experience from a business perspective. In addition to a master's degree in health systems administration, Jacobs has a Six Sigma green belt. She rated a 12-hour wait in the ER for hospital bed at a 7% process cycle efficiency.
Jacobs has personal advocates that cover all areas of healthcare expertise: medical, health IT, public health and health systems. Even with a dream team to help her navigate the system, she has had sub-standard care, authorization nightmares and paperwork frustrations.

"I am a one-woman HIE, and I still have to carry my medical records with me in a big pink binder," she said.

Cryer and Jacobs were not the only healthcare pros at the event to make this observation about America's healthcare system: "If I can't do it, who can?"

Fortunately, Cryer and Jacobs are working inside and outside the system to make healthcare better for all of us. Jacobs is starting a new job as the director of innovation at Aetna. Cryer is working to get all her doctors to talk to one another and to get the administrator of the hospital to address her closet-room experience.

It was sobering to hear how difficult it is for even the most informed people to get the right care, but inspiring to know that nothing has shaken either woman's determination to change that.

DBSA is awarded VA contract for second year

DBSA Awarded VA Contract to Train Veterans as Peer Specialists

Contact: Lisa Goodale (312) 988-1155 LGoodale@DBSAlliance.org

## FOR IMMEDIATE RELEASE ##

April 8, 2013, Chicago, IL—The United States Department of Veterans Affairs (VA) has awarded the Depression and Bipolar Support Alliance (DBSA) a second contract for training and certification of peer support staff employed by VA facilities across the country. A peer support specialist is an individual with the lived experience of a mental health condition who has been trained and certified to help peers gain hope and move forward in their own recovery.

Training prepares individual Veterans to assume roles in VA medical centers and other facilities as part of major expansion of peer support services within VA facilities. DBSA's initial training contract began in October 2012, and the new contract provides for DBSA to train an additional 160 Veterans during 2013. The first training course kicked off in February 2013.

"DBSA's long history of success in providing skills-based training for peer specialists makes it a strong partner for our efforts in this arena," says Dan O'Brien-Mazza, National Director of Peer Support Services for the VA Office of Mental Health Services.

The rapid increase in peer support positions results from an executive order, issued on August 31, 2012 by President Barack Obama, to improve access to mental health services for Veterans. The order directed the VA to expand its peer workforce by an additional 800 individuals.

These new positions will only go to Veterans who have recovered or are recovering from a mental health condition and who are trained and certified according to VA requirements.

DBSA President Allen Doederlein is honored to bring DBSA's nationally recognized training services to Veterans. "We know from 30 years of promoting and fostering peer support and peer leadership that sharing experience of a mental health condition has a unique power to affect understanding, acceptance, and a belief that recovery from debilitating mental health symptoms is possible," says Doederlein. "To bring this peer perspective into the lives of our nation's Veterans who need mental health care is an opportunity to celebrate their selfless dedication to our nation's safety and give back to those who give so much."

Under the contract, DBSA provides comprehensive instruction in 34 competency areas through a combination of distance learning and face-to-face training courses. Trainees must satisfactorily complete both a written exam and in-person skills observation. Trainers all have the lived experience of a mental health condition and a minimum of three years experience as peer specialists.

###

The Depression and Bipolar Support Alliance (DBSA) is the leading patient-directed national organization focusing on depression and bipolar disorder.

Sent from my iPad