Patients Helping Patients

Amidst Meaningful Use, PQRS, ICD-10 implementation and all other initiatives that our practices face this spring, a bright spot is blooming in San Diego. No, CMS has not retracted its rigors, our rounding responsibilities have not been relinquished, we have yet to memorize that 585.5 must soon equal N18.5 and we still struggle with how to efficiently and effectively meet MU Stage 2.  What is new in the San Diego renal community is patients helping patients; a mentor program designed by and for patients to improve clinical outcomes by improving patient centered education and support.

For many years Balboa Nephrology Medical Group, Inc. (BNMG) has been interested in a patient mentor program, but was never able to continuously sustain such a program.  In late 2013, under the continued efforts and vision of Dr. Steven M. Steinberg, BNMG’s CEO, the Group gained traction through a not for profit CA 501 (c) corporation named ReMend: Renal Empowered Mentors for Education in Nephrology and Dialysis. [ReMend Mentors do not offer medical advice; that is, they are trained to refer patients back to the healthcare team if medical questions arise.]

In an email message to BNMG physicians introducing the program in fall 2013, Steinberg wrote, “Despite direct MD to patient education, despite TOPS, despite disease management by the RCC, despite numerous available pamphlets and videos, a major impediment to getting patients to having a AVF, or choosing home dialysis, or getting a kidney transplant, is denial, disbelief, distrust, and misinformation. Nothing is better than a patient who has had ESRD, been on home dialysis, or had a transplant, to help teach and lead the new patient to the right choices. No matter how much we explain and direct, we have not been on dialysis or had a transplant, and that part of the process to convince patients to make the right choice is missing. A corps of credible patients, who have had the experience of ESRD and had to make the choices themselves, is a powerful tool for BNMG”.

BNMG was fortunate to have one of its transplant patients, Dennis Bourque, share Dr. Steinberg’s vision of developing a mentor program in San Diego.  In addition to a new kidney transplant, Mr. Bourque’s 10 years of experience working with Renal Research Institute to address fluid overload provided him with a unique perspective and resolve to help get ReMend started.  Much of his time is dedicated to developing successful strategies for ReMend and overcoming obstacles that many start up organizations face.  After the legal structure was developed, ReMend used BNMG as a vehicle to carefully recruit mentors for the program by asking its physicians to refer patients they believed would make good role models.

ReMend now has a culturally diverse and dedicated team of 15 mentors that have experienced all forms of dialysis, undergone transplants and kidney donation.  All the mentors have exhibited a desire to help patients with their past experiences and have a positive approach to dealing with their health. I was overwhelmed and inspired during the first evening when we had all the prospective mentors in one room.  They each shared stories of struggle, courage, hope and a very strong commitment to give back!

While both ReMend and BNMG were anxious to pair its mentors with patients the group proceeded cautiously to ensure the sustainability of the program by providing adequate training.  The training took place over several months and included HIPAA, legal, dialysis, transplant and donation.  The training was provided by key staff from BNMG, dialysis provider and transplant center.  This collaboration between medical group, LDO, Transplant Center and non-profit is the first of its kind as it relates to a mentoring program, setting ReMend apart from other like organizations. Ongoing mentor training will be hardwired into the program.  Past trainings have been videotaped to assist in future mentor on-boarding.

This unique collaboration will allow the program not only to provide encouragement and guidance to patients and their families but also improve quality and clinical outcomes through mentoring.  ReMend will focus on the following quality measures to monitor the program success:  Home dialysis education and adoption, AVF v. Catheter, missed dialysis treatments, donors and transplants, transplant medicine adherence and fluid & salt control.  ReMend feels strongly that it will be able to improve quality patient care by utilizing these measures for the patients they reach based upon their own experience in dealing with the same complex issues.

Like any viable organization ReMend needed funding and an operational budget. BNMG’s Board of Directors approved some seed money to get the program started and most of the legal work related to the non-profit corporation was done pro bono.  Mr. Bourque continues to work tirelessly fundraising and collaborating with LDOs, transplant centers, pharmaceutical companies, private foundations, and individual contributors.  Grants and contributions support an operating budget for 2014 to cover rent, insurance, payroll, travel, printing, marketing, training and legal fees.

“No matter how close a person with kidney disease is to friends, family, or their renal team, no one can fully understand an individual’s feelings and fear without walking the same path. All of our mentors clearly remember the day when their nephrologist told them they had ESRD and how angry and hopeless they felt. The ReMend program empowers patients to move forward with their lives after being diagnosed with ESRD. Support from friends, family and the renal care team can often help, but talking to someone who has been in the same situation is often the best for calming nerves and realizing positive outcomes. This one-on-one communication with another dialysis or transplant patient offers both an individualized and highly personal account of the dialysis and transplant process that is rooted in the mentors own experience.” –Dennis Bourque

While BNMG was fortunate enough to have executive level, physician sponsorship and a very capable transplant patient to build a mentor program, I understand that this model may not be realistic for all practices.  The ReMend model took a significant amount of effort to get off the ground with much of the burden on the medical group. We learned that not every patient willing to be a mentor had the skill set to be part of the program.  Some patients wanted to participate but found the meeting/training frequency too difficult.

The common denominator that we all have is patients that want to share their experience and help other patients.  Our model doesn’t need to be duplicated; there are many other programs that exist and are waiting for you to tap into.  The National Kidney Foundation’s PEERS program is just one example that offers a telephone-based peer support group.  It connects people who want support and helps them adjust to life with CKD, ESRD or a kidney transplant.  Simply go online and you can start connecting patients today. . If you are considering a more full-bodied program the NKF also provides a rigorous mentor training program.  Whether you build your own, adopt an existing or create a hybrid program, mentoring will help your patients and can improve clinical outcomes.

As Dr. John Sadler reminded attendees at the Annual RPA meeting in Baltimore, let us not get too caught up in the frenzy of government regulations and cumbersome compliance. He said, “Remember our patients are our reason for existence; focus on them and we can fulfill our purpose…If you always start with the patient, your reasoning will be good. If you get away from patients, you won’t have the credibility”.  At BNMG we take care of many patients and with the help of ReMend we now have patients helping patients.