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PaTH Network starts studying patients at four institutions with support from the Patient-Centered Outcomes Research Institute
Which health outcomes really matter to patients? That’s the question the PaTH Network is starting to investigate with the help of nearly $7 million in funding from the Patient-Centered Outcomes Research Institute (PCORI), a non-profit created through the Patient Protection and Affordable Care Act.
Four major university health systems—Penn State, University of Pittsburgh, Temple University and Johns Hopkins University—make up the PaTH Network. It’s one of 29 health data networks across the country and a coordinating center, collectively known as PCORnet, funded by PCORI.
PCORI’s mission is to help patients, their caregivers and healthcare providers make informed healthcare decisions based on outcomes that are relevant to those living with a particular condition. That means designing studies that track these patient-centered outcomes.
“It’s traditionally been the researchers who have determined what the outcomes should be in studies,” said Dr. Cynthia Chuang, professor of medicine and public health sciences and Penn State’s lead principal investigator on the project. “For a long time, that really seemed to make sense, until you think about: How do we know that these are the outcomes that really matter, and who should the outcomes matter to? When you think about it that way, it should be the patients who say, ‘Having my condition, these are the things that are most important to me.'”
While researchers typically focus on scientific measures like lab values, Chuang said, patients might be more focused on their quality of life, whether or not they can walk without using a walker or how they can take fewer medications.
The PaTH Network is using PCORI’s funding to study patient-centered outcomes for atrial fibrillation (AF or A fib, the most common type of irregular heartbeat) and idiopathic pulmonary fibrosis (IPF, a rare lung disease with an unknown cause). All of the clinical data research networks in PCORnet, including the PaTH Network, are also working together to better understand the development and treatment of obesity, as well as how some people maintain a healthy weight across their lifetime. By joining forces with other institutions, researchers will have far more patients involved in the study—potentially 3 million in the PaTH Network alone—making the study results much more powerful.
The benefits of larger studies are perhaps obvious for rare conditions, like IPF, for which a lone institution might only have a handful of participants. But large groups of participants also help advance research in more common conditions, like atrial fibrillation, that have many treatment options and no gold standard of care.
Penn State College of Medicine is nearing the end of the inaugural year of its Systems Navigation Curriculum (SyNC) that embeds first-year medical students into the healthcare system as patient navigators.
The first-of-a-kind innovative and novel academic program was made possible by a $1 million grant from the American Medical Association, awarded to the college last year for its ideas for reshaping medical education.
The experience offers future physicians a look at what patients often face when trying to maneuver through a complex and often confusing healthcare delivery system. It helps students understand the healthcare system as a whole and not just their individual roles.
“In the long run, it will help them become better physicians because they will have a better understanding of what the patient goes through at home, outside the healthcare system,” said Deanna Graaf, patient navigation coordinator. “The curriculum gives the students a holistic view of the patient. It allows them to see other factors that affect patient care, not just the medical diagnosis.”
In observance of Child Abuse Prevention Month, a pinwheel garden sits at the base of the statue in front of Penn State Hershey Children’s Hospital. The 197 pinwheels represent the number of children who were evaluated by the Child Protection Team of the Penn State Hershey Center for the Protection of Children in 2014.
The Center was created in 2011 and also includes the Transforming the Lives of Children (TLC) Clinic.
The Child Protection team sees children in both the Medical Center and the outpatient clinic sites for suspected physical abuse, neglect, or sexual abuse. Referrals come from community agencies such as Children and Youth Services (CYS) and from physicians in the community as well as the Children’s Hospital network.
”We help evaluate injuries and the medical condition of children,” said Dr. Kate Crowell, a pediatrician on the Child Protection Team. “We determine if injuries are consistent with the history provided, with a medical diagnosis or consistent with abuse/neglect. We speak with families about their medical history and social history, identify potential safety risks that may exist, and assist medical providers with the care of their patients. We work in conjunction with CYS by providing them medical information that is pertinent to their investigation. CYS is involved with ensuring the safety of the home, with formulating safety plans (when necessary) and with communication with law enforcement.”
The Center’s TLC Clinic, which started in the fall, provides a medical home for children in out-of-home placement (foster or kinship care) and mental health services for children who have experienced trauma (abuse or neglect). The mental health services include parent-child interaction therapy as well as trauma focused cognitive behavioral therapy.
The blue pinwheel is the symbol of Prevent Child Abuse America. For more information, visit preventchildabuse.org.
For More information on the Center for the Protection of Children, visit pennstatehershey.org/protection-of-children.
Missi and Adam Prosser clapped their hands behind their six-month-old daughter’s back. They blew a whistle next to Nora when she was asleep in their Mechanicsburg home.
Nora didn’t respond.
The couple noticed that Nora wasn’t babbling like their older two daughters had at that age. She would imitate mouth movements, but no sound came out. Their pediatrician referred Nora for hearing tests, which confirmed their suspicions.
Nora had profound, congenital hearing loss in both ears.
For six months, the Prossers worked with early intervention therapists to give Nora signs and visual language to help with her diagnosed speech delay. Hearing aids didn’t seem to help.
Online research and conversations with medical professionals at Penn State Hershey led the couple to decide they would have Nora evaluated for two cochlear implants, electronic medical devices that replace the function of the damaged inner ear, providing sound signals to the brain.
First available in the 1980s, cochlear implants have become more common for both children and adults with severe-to-profound hearing loss.
The Prossers scheduled surgery for shortly after Nora’s first birthday. Three days before, she came down with a fever. They rescheduled for November, but the anesthesia team sent them home rather than risking surgery while Nora had a cold. Finally, on January 8, the Prossers spent one long day at Penn State Hershey and had Nora’s implants put in.
“If you implant kids between ages one and three, nine out of 10 of them will be able to progress with their hearing to where they can use a phone and be in mainstream classes by kindergarten,” said Jason May, the surgeon who placed Nora’s implants. “They do real well long term.”
Two months later, when things had healed and the swelling had decreased, the Prossers returned to Penn State Hershey to activate Nora’s implants. (more…)
Last week, Penn State Medicine connected with three College of Medicine students to discuss Match Day, the day graduating medical students learn what residency programs they will attend. In this video, Carina Brown, Timothy Brown, and Jon-Ryan Burris talk about Match Day, their time at Penn State Hershey and say where they have matched to:
You’re a teacher in a preschool classroom of 4-year-olds. You interact with children, parents and support staff on a daily basis. You are concerned that a child may be being abused. How can you be sure if there is enough to constitute reasonable suspicion? What do you do about it? How do you handle resistance from colleagues?
A new, free, online training module created by Dr. Benjamin Levi, director of Penn State Hershey’s Center for the Protection of Children, takes childcare providers and employees of daycare centers through an interactive, story-based program that gives them the experiential learning they need to more accurately identify and report suspected abuse.
The module launched just in time to help childcare providers comply with a Pennsylvania law that went into effect at the beginning of the year requiring completion of three hours of training on the subject.
Levi has spent 12 years researching reasonable suspicion, and 2 1/2 years creating the interactive training course to engage those who are often most likely to encounter the signs and symptoms of abuse.
“Three out of four children who die from child abuse are younger than 5, yet childcare providers have one of the lowest reporting rates of all mandated reporters,” Levi said. “And yet they serve the most vulnerable population.”
The training at iLookOutForChildAbuse.com begins with a 10-minute pre-test, followed by the 90-minute, story-based experience and a 10-minute post-test. It also includes handouts and post-training resources. Participants must stop to answer questions, make decisions and render judgments along the way, just as they would in real life.
“It’s not just information delivery,” Levi said. “It’s about helping people connect and see their own role in it all.”
If laughter really is the best medicine, Bailey Sanders is going to make a great doctor. Sanders was chosen by her peers in Penn State College of Medicine’s Class of 2014 to give this year’s student commencement address. The future doctor kept the crowd in stitches, threading together humorous examples to illustrate three components to building a life and career free of regrets.
Sanders posited that passion is one key ingredient, and for an example looked to a scientist who drank the contents of his own petri dish and “documented his subsequent suffering with regular biopsies and his mother’s opinion of how his breath smelled.” The unconventional experiment resulted in a Nobel Prize.
To hear Sanders’ full commencement speech, watch this video: