Patient Research Advocates | Private Patient Advocates, Inc.

From Patient To Patient advocate

On May 24, 2019, I was faced with the life-changing diagnosis of Invasive Lobular Carcinoma, (ILC).  This is an understudied sub-type of breast cancer that impacts approximately 45,000 people in the United States, which is about 10% of all breast cancer.  It does not have a specific protocol in the U.S. and is treated just like the most common form, which is Invasive Ductile Carcinoma, (IDC). 

I was given the choice between lumpectomy with radiation or a mastectomy without radiation. I had no idea which was most appropriate. I chose lumpectomy with radiation simply because that's what my mother did.  That's not how those decisions should be made!

Every breast cancer patient deserves an independent private/personal patient advocate to guide them through the process without the influence of the advocate/navigator being employed either by a hospital or insurance company.  Ultimately, employees are loyal to their employers, this is why independent patient advocates are important. Independent advocates have one allegiance - to their client.  Currently, insurance does not reimburse independent patient advocate services, and I want that to change.

Patients should be able to make medical choices based on facts and data with full understanding of the financial and physical impact of each choice and independent patient advocates can help.  

In June 2024, I made the difficult decision to a senior level corporate position to pursue positive change in our healthcare system and support breast cancer research. 

IMPROVE HEALTHCARE 
AND REDUCE COST

Conduct a proof of concept to demonstrate the benefits of incorporating an independent patient advocate at the time of breast cancer diagnosis, prior to the first appointment with their specialist.

Goals:

To identify and document patient questions to be clarified with their physician by reviewing medical records with the patient.
Streamline physician/patient communication by reducing physician time spent on Q&A. 
Enable educated patient decisions with an understanding of the physical and financial impact of their choices.

Proof of concept methodology:

Identify a college or university to create a curriculum for patient advocates.
Identify a breast cancer clinic or hospital to participate in the pilot.
Identify an insurance company to participate in the pilot.
Measure results through patient, physician, university and insurance company pre- and post-pilot surveys.

Research patient advocacy
(Volunteerism)

Currently engaged in the following breast cancer research initiatives:

Breast Cancer Research Program, under the Congressionally Directed Medical Research Program (CDMRP), panel member to review breast cancer grant applications.
Prior Authorization Certified Specialist, certification attained.
Susan G. Komen - Office of Public Policy Ambassador, Engage with state and federal legislators regarding breast cancer advocacy.
Susan G. Komen - Advocates in Science, scholarship to the Northwestern Medical University's Lynn Sage Breast Cancer Symposium in October.
Board Certified Patient Advocate, certification attained.
- Present - Inaugural member of UT Southwestern's Research Advocacy Program, Support grant applications from UT Southwestern to grant agencies with Lay Abstract Review and Patient Advocate Letter of Support, review grant applications to UT Southwestern from those seeking grant funding, collaborate with physician researchers as requested to provide input from the patient's perspective.
- Present - Member of the Lobular Breast Cancer Alliance Research and Education Committee.

Private Patient Advocates, Inc.

Advocacy for Breast Cancer patients and Medical research

From Patient To Patient advocate

IMPROVE HEALTHCARE AND REDUCE COST

Research patient advocacy (Volunteerism)

Values

Candid conversations are essential

Resiliance comes from faith - I believe God has plans for all of us