100 Associations

Associations in Specialized Healthcare Step Up

By / Aug 12, 2020 The Muscular Dystrophy Association is leaning on big data to help produce better outcomes.

Holistic patient care; more long-term cancer survivors; big data improves neuromuscular disease treatment; free genetic testing for Parkinson’s; precise diagnosis; no more transplant waiting list.

Meeting Patients Where They Are

Healthcare • Academy of Medical-Surgical Nurses

The Academy of Medical-Surgical Nurses focuses on predicting and preparing nurses for the future of healthcare. The future came much sooner than anticipated when the COVID-19 pandemic hit.

AMSN CEO Terri Hinkley says the public health crisis heightened the importance of a holistic approach to patient care, the focus of AMSN’s competency model that Hinkley says will ensure that medical-surgical nurses at all levels of practice will have the competencies they need to improve patient outcomes in the future.

Holistic care—treating the whole patient by considering health factors such as income, housing, and unemployment—provides a much more well-rounded understanding of the patient and their unique needs. Hinkley says understanding these aspects of a patient’s life “matter now more than ever because of the pandemic and are so critical in assessing the health and well-being of the population.” — Lisa Boylan

(Burazin/Getty Images)

Long-Term Cancer Survivors

Healthcare • Advanced Practitioner Society for Hematology and Oncology

A shortage of hematologists and oncologists makes accessing cancer care challenging, which is why assembling a team of healthcare professionals—including nurse practitioners, physician assistants, clinical nurse specialists, advanced degree nurses, and pharmacists—is critical.

“It really takes a whole village to achieve the best outcomes for someone with cancer,” says Wendy Vogel, executive director of the Advanced Practitioner Society for Hematology and Oncology.

APSHO educates and supports advanced practitioners in their critical roles caring for patients with cancer. A collaborative model allows each person on the patient care team to work at the top of their scope of practice.

“Our mission is to improve oncology care so that everybody diagnosed with cancer becomes a long-term survivor,” Vogel says. “In 20 years, we’re probably going to have more cancer survivors than ever.” — Lisa Boylan

Data-Driven Patient Care

Healthcare • Muscular Dystrophy Association

Patients at all ages and stages of disease need to be seen and counted by the medical and scientific communities as they are working to develop drugs and improve care. The Muscular Dystrophy Association’s MOVR Data Hub (neuroMuscular ObserVational Research) aims to do that by providing a central location for data about people living with neuromuscular disease.

“The goal of MOVR is really to bring together a big-data approach to both improve care for neuromuscular disease patients and also to make drug development more efficient,” says MDA’s Sharon Hesterlee, Ph.D., executive vice president and chief research officer. “MOVR gives us the tool we need to apply a fairly sophisticated analysis to everything from how we recruit patients to what interventions are performing better than others.”

In the long term, she says, “We hope for more drugs, faster drugs, more effective drugs, and ultimately better clinical care.” — Lisa Boylan

(Miguel Navarro/Getty Images)

Genetic Testing for Parkinson’s Patients

Healthcare • Parkinson’s Foundation

PD GENEration, an initiative of the Parkinson’s Foundation, will give thousands of Parkinson’s patients access to free genetic testing and counseling, which will help uncover new treatments for the disease by examining Parkinson’s at a genetic level.

Only 10 to 15 percent of people with Parkinson’s have the genetic form of the disease, and in most cases, they don’t know it.

“By better understanding how these people experience symptoms related to the disease and respond to treatments, scientists can begin to build the foundation for precision medicine in PD,” says Parkinson’s Foundation Chief Science Officer James Beck, Ph.D.

The results will also help patients and their doctors determine whether the patients may be eligible to participate in clinical trials. The initiative began with a pilot program and will expand nationally to up to 50 centers and offer genetic testing and counseling for up to 15,000 patients with Parkinson’s by 2024. — Lisa Boylan

Diagnosis Without Guesswork

Healthcare • National Society for Histotechnology

Taking the guesswork out of diagnosing diseases starts with histotechnologists. These specialists cut and stain biopsy specimens, which helps clinicians select the best course of action for treating patients—and achieving the best chance for a cure. When a disease is diagnosed, the treatment is based on the type of disease and the patient’s specific cell biology.

The crucial work performed by histotechnologists could lead to breakthroughs in curing cancer and other diseases because the discipline is based on precision medicine. National Society for Histotechnology Executive Director Sharon Kneebone, CAE, sees a future in which “cancer treatment will no longer be the best guess. It will be precise, based on the histological slide.”

NHS advocates for better education and certification procedures for its members. Research points to a longer life expectancy for patients with biopsies processed by a certified histotech. — Lisa Boylan

In-Time Transplants

Healthcare • Association of Organ Procurement Organizations

More than 112,000 people in the U.S. are waiting for a lifesaving organ transplant, according to the Association of Organ Procurement Organizations, and every 10 minutes another person is added to the list. Each day, 20 people die waiting.

AOPO represents the 58 federally designated organ procurement organizations, which coordinate the recovery of organs, tissues, and corneas for transplant. “The more OPOs can be consistent in their practices, the better we all can communicate and improve our performance,” says CEO Steve Miller, CAE. AOPO focuses on standardizing best practices and collaborating with organizations in related disciplines.

The work is paying off: A record number of donations and transplants occurred in 2019, as tracked by the United Network for Organ Sharing.

“AOPO and its members actively work toward the day when there is no longer a waiting list for individuals in need of a lifesaving organ transplant,” Miller says. “If we are successful in this mission, the day will come when no one dies awaiting an organ transplant.” — Julie Shoop

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