Five awards and several honorable mentions brought patient honorees on stage last night (December 7th) for the 2017 Patients’ View Impact Awards, the only national awards that honor the power of one patient’s story to impact health care for the better. For the third year in a row, the awards were presented with the Leapfrog Group during its “Top Hospital” awards presentation.
The awards, sponsored by the National Board of Medical Examiners (NBME), capped a competitive judging process. There were some 60 entries for the four awards, all of which were stories submitted by patients. A fifth award, the 2017 Patient Champion Award, went to the Leapfrog Group for its continued support of PVI and the Patient Voice.
“These stories remind us why we do the work we do in health care”, said Leah Binder, Leapfrog President and CEO.
“PVI is honored and humbled to bring attention to the enormous courage and generous spirit of these patients, all of whom have leveraged their challenges into opportunities to help others,” said PVI Founder and Executive Director Pat Mastors.
Patients’ View Impact Award honors a patient’s story told and submitted by a patient or their loved one, judged by the story’s potential to have a positive impact on improving the delivery of any aspect of care.
Winner – Kristen Terlizzi (Saratoga, CA) – During the birth of her second child, Kristen nearly lost her life due to a condition called placenta accreta, where the placenta invades other organs. Unbeknownst to her, these complications are a risk due to a previous Cesarean birth (her first child). Given the rise of Cesarean births in recent years, and the fact that many are unaware of this risk factor, Kristen is passionate about bringing attention to this issue. Her story has shown up in media such as the Wall Street Journal and People.com. https://www.youtube.com/watch?v=2indLATG6Sw&feature=youtu.be
Honorable Mention – Tonya Nash (Newnan, GA) – Tonya’s military family moved around a lot, so she knew firsthand how difficult it was for her two autistic sons to adjust to new places, most especially when it came to church. Tonya wondered why there wasn’t more support for adults and children with special needs in the church, and so started the Autism Awareness Month Faith Based Initiative. Now 23 churches are participating by engaging in at least one activity around Autism Awareness in the month of April. (Tonya’s son drew the logo for this initiative; he shares the screen with mom in the submission video.) https://youtu.be/XH6rKKyca4c
Patients’ View Partners in Healing Award honors a patient’s story told and submitted by a patient or patient’s loved one, showcasing how the partnership between a patient (or loved one) and a clinician, hospital or system achieved a healing healthcare experience.
Winner – Patience Leino & UNC Medical Center (Knightdale, NC) – Patience’s first child was born with a serious heart defect and died at 6 months old. Patience has since turned her heartache from losing her child into a passion for collaboration with medical teams and has become a key ally in ensuring the patient perspective is integrated at her hospital and elsewhere. She credits UNC Children’s Hospital’s PICU with helping her through her difficult times. https://www.youtube.com/watch?time_continue=1&v=MU-ygeAaN1k
Honorable Mention – Sue Hassmiller and Kathy, RN (Princeton, NJ) – Sue is an RN herself, in charge of nursing excellence for the RWJF, but found herself deeply impacted from the other side of the bed when her husband became quadriplegic as the result of a bicycle accident. During his 10-day stay in ICU, she was struck by the lack of warmth and compassion she had been expecting as part of his otherwise excellent care. She brought in pictures and shared stories of her husband to help remind the doctors of the man they were treating. A huge exception was a nurse, Kathy, whose care and compassion were unforgettable, as Kathy stayed past her shift to be with Sue when her husband was taken off life support. https://youtu.be/_tuS1oDdRAs
Hope Award honors a first-person patient or family story about an adolescent or teen’s struggle to get appropriate help with a mental health or substance abuse crisis.
Winner – Gabe Howard (Columbus, OH) – Gabe suffered greatly from undiagnosed bipolar disorder for 24 years, which deeply impacted not only himself but his home life and relationships. After a suicide attempt, he was fortunate to be brought to the ER by a woman he was casually dating, and his condition was finally recognized and treated. Gabe considers himself one of the lucky ones, and now contributes to podcasts and blogs to help others seek treatment and to destigmatize mental health issues. https://www.youtube.com/watch?v=hEjQOdy7co8&feature=youtu.be
Honorable mention – Karla Buchanan (Kokomo, IN) – Karla and her husband, who themselves have bipolar disorder, have fostered dozens of children of all ages with behavioral health challenges. It has been an ongoing struggle to get the help they needed. The Buchanans advise other parents to “love your child and love yourself. Take good care of yourself as well as your teen. Believe in your child and never give up hope!” https://youtu.be/TpwVVcjePwQ
Lifetime Achievement Award
Jack Whelan (Andover, MA) – Sadly, Jack passed away of cancer two weeks to the day prior to this night. His wife, Jan and daughters Patti, Lori and Karen attended and accepted Jack’s Lifetime Achievement Award on his behalf. Jack’s daughter Patti has been sharing her dad’s current journey with late-stage cancer on her blog. PVI was able to interview Jack via Skype about receiving this award.
Jack’s extraordinary and moving story, followed by the acceptance of his award on stage by his wife and three daughters, brought the audience to tears. https://youtu.be/eNfNbQ02Cyo
Jack Whelan was an extraordinary patient advocate who has helped bridge the well-known communications gap between patients, physicians, policymakers, pharmaceutical companies and others in life sciences. For many years following initial diagnosis, Jack was in twice-weekly chemo treatment for a rare incurable blood cancer while still active and often “on-the-road” as a Patient Advocate, Research Advocate and Legislative Advocate. In 2016, Jack was also diagnosed with stage 4 prostate cancer that had metastasized to his bones.
When told his blood cancer was rare and incurable, Jack began to learn as much as possible about the biology of his cancer and explored treatment options to help make the right decisions about his own care with his physician; thus becoming known as an e-Patient, electronically connected, educated and more. Described as a “one man band with a big drum”, Jack spent the last decade leveraging the capabilities of large national advocacy organizations to help educate policymakers and lawmakers about the needs of Patients. Jack was active with the National Organization for Rare Disorders (NORD) and Rare Disease Legislative Advocacy (RDLA), LLS, AACR and ASCO each have arranged effective one-on-one meetings with Federal and State Lawmakers. Jack talked about the urgent need to educate lawmakers about the need to change out-of-date assumptions in health care and opportunities for efficiencies and savings enabled by modern medicines.