Prostate Cancer Research

THE SOILLSE RESEARCH SCIENTIST IN PROSTATE CANCER QUALITY OF LIFE RESEARCH PROJECT: BRINGING THE PATIENT’S VOICE INTO THE MEDICAL SYSTEM

(Excerpts of this story taken from "Celebration" the DMRF Impact Report to Donors 2017)

Quality of life can mean different things to different people.  Quite often, it encompasses health, security, mental well-being, and positive relationships.  Enter, an in-depth and forward-thinking wave of health and wellness research: patient-reported outcomes measures or, PROMs.  PROMs are questionnaires that measure health as viewed by the patient and are used in conjunction with the usual biological markers.  The use of PROMs is on the rise in the medical research arena and Dalhousie Medical School has begun focusing on utilizing this patient-centric research style.

Dr. Gabriela Ilie, the Soillse (sohl’sha) Research Scientist in Prostate Cancer Quality of Life Research - an endowed research chair position created and funded by Frank and Debbi Sobey – is committed to delving into all aspects of health for prostate cancer survivors.  Dr. Ilie's primary research uses an epidemiological lens to measure and understand the prostate cancer patient and caregiver’s quality of life and how the patient’s experience can inform care to improve the lives of men living with prostate cancer. 

BUILDING RELATIONSHIPS TO CREATE AN STRONG OUTCOMES NETWORK

Dr. Gabriela Ilie believes it takes more than one voice to impact healthcare. A passionate advocate for patient-centric research and care, she has spent a large part of the last year growing and establishing relationships with a variety of stakeholders including, to name a few, the Nova Scotia Health Authority, heads of urology, clinicians in urology, radiation oncologists, prostate cancer support groups, and patients from across the Maritimes. Impressively, Dr. Ilie also engaged Nova Scotia Health Authority IT in the purchase and implementation of an advanced data collection software program named REDCap, which promises to provide a stable and user-friendly platform for users.

Dr. Ilie has laid the foundation for establishing a research infrastructure that captures the quality of life through patient and partner reported outcomes.  Based on extensive reviews of literature, Dr. Ilie compiled a short 15-minute survey that can be accessed from any computer or electronic device.  Ideally, this will influence care and help shed light on how to best improve outcomes and the quality of life of prostate cancer patients.  This infrastructure will allow us to form a Maritimes database of prostate cancer quality of life self-reported outcomes data that will be the first of its kind in Canada.  The information collected in this database will infuse healthcare providers with an in-depth knowledge as to how men heal from prostate cancer at all levels, including functional, psychological, and behavioural aspects.  For cancer survivor Frank Sobey and his wife Debbi, that's good news.

“My experience with cancer reaffirmed my already-strong belief in the value of research,” says Frank, DMRF donor and former board chair. “Debbi and I created the Soillse fund because the word Soillse is Gaelic for 'guiding light' and the goal of this project is to shed light on how best to improve outcomes and quality of life for men following treatment for prostate cancer."

The pilot project engages patients, their partners, clinicians, and researchers in the evaluation of its effectiveness and feasibility moving forward.  Patients can access a link to the survey through their clinician, attending nurses, radiologist, therapists, and contacts at community outreach programs.  This infrastructure has the potential to be a model of surveillance that will be expanded to other areas of oncology and medical care.  Dr. Ilie and her team at Dalhousie have set the stage for this progressive form of treatment and care.

"The Sobey family created the Soillse fund for a purpose that has a heartbeat," explains Dr. Ilie.  "I've made it my mandate to bring the voice of the patient into the medical system because we should all be involved:  patient, partner, family, clinician, researcher, support groups, stakeholders, and donors – we all play an important role in the healthcare system.  You can't reach a goal that involves everybody by not involving everybody.  That focus is my ‘guiding light’.”

The Soillse project was established with the idea that not all men experience positive outcomes after their prostate cancer and treatment.  Incidents from urinary incontinence and erectile dysfunction to depression and anxiety can be a constant reality.  This survey and subsequent data will give men an opportunity to expand their healing potential via avenues that explore the complexities of the human healing process. 

Improving the quality of patient care will affect not only affect those who have had prostate cancer, it will impact a course toward improving patient engagement and treatment on all levels that’s a reason to be Maritime proud.  

"We have a tremendous asset here in the Maritimes,” States Frank Sobey.  “With Dalhousie Medical School and its affiliated teaching hospitals, there is truly groundbreaking work happening right here, with incredible potential not only to save and improve people’s lives but also to form the nucleus of a vibrant economic sector.”

For more information on how you can support this project, please contact Beth Swarbrigg, beth.swarbrigg@dal.ca or 902-494-1592.