Patient expertise is fundamental to an understanding of the patient experience
Sometimes, all it takes to make a difference is a handshake, a smile and the words ‘tell me about yourself.’
Mary Runte is reaching out to arrhythmia patients – including families and support groups – to document and share their experiences of living and dealing with the illness.
Runte, a CANet Investigator, Chair of the CANet Patient Advisory Committee, and professor at University of Lethbridge’s Faculty of Management, recently received CANet’s dedicated Social Sciences Grant totaling $240,000, for her project, ‘Mapping the Arrhythmia Patient Journey’ which documents the social, emotional and psychological impact of arrhythmia in patients.
Her research will provide Canada’s first in-depth and comprehensive record of the patient experience of arrhythmia through the perspective of the patients themselves.
From this information, doctors will be able to design more efficient, effective and holistic interventions that will take into account patient priorities.
It is also essential to take into account the economic, social, and psychological impacts of the illness in patients suffering from arrhythmias. For example, doctors are often unaware of arrhythmia’s effect on a patient’s employment situation, family responsibilities, and lifestyle choices.
“Real world measures are important when real-life problems are being investigated,” Runte says.
She is an arrhythmia patient herself.
Runte, who is the Chair of the Patient Advisory Committee of CANet, will lead an interdisciplinary team of experts in medicine, policy, economics, and psychology.
She and her team will ask the participants – arrhythmia patients and their family members, and support groups – to share their personal narratives and stories of their illness.
“This will give us a broader understanding of the complexity and diversity of experiences,” Runte says.
Using this data, Runte and her team will develop a survey to help patients identify and prioritize social, psychological, and economic factors that are most impacted by their illnesses.
Doctors can refer to this information to design interventions around them.
Runte will eventually extend this CANet research, currently based in southwest Ontario, all across Canada.
“I want to document the similarities and differences in the cardiac care experience of Canadians across different provinces and territories,” Runte says.
Runte’s research builds on CANet’s previous interdisciplinary research across atrial fibrillation (AF), sudden cardiac death (SCD) and syncope in Canada.
Importantly, it extends CANet’s objective to put patients on the forefront and empowering them to manage their conditions while providing them with a sustainable health system.
The work will train at least five Highly Qualified Personnel (HQP), and expose them to the multidisciplinary CHAT (CANet HQP Association for Trainees) program, keeping in mind CANet’s goal to train the next generation of researchers in patient engagement and partnership.
Runte is working with five patient-partners – people currently suffering from AF or syncope, and in one case, a SCD survivor – who will share their experiences and expertise with the team, and will also help in recruiting patients.
“This project will be patient co-led through all phases,” Runte says, adding, “Patient expertise is fundamental to an understanding of the patient experience.”