Learner Testimonials and Stories

Dr. Jean Miller, PaCER Graduate

As people with arthritis, Jean along with her PaCER colleague Sylvia Teare, collaborate with Alberta arthritis researchers to improve Albertans’ access to community support for self-managing their arthritis. Since completing their internship where they conducted a peer-to-peer analysis of The Experience of Waiting for Help with Osteoarthritis, they have worked on three PaCER studies that have brought a collective patient voice of osteoarthritis, rheumatoid arthritis, and First Nations rheumatoid arthritis patients to an Alberta research initiative that is creating an optimal model of care for the efficient delivery of appropriate and effective arthritis care.

They co-led the PaCER component of a knowledge translation project (Building Partnerships to Improve Care of Early Knee Osteoarthritis Patients) where patients, family doctors, and researchers are co-designing a tool to help patients better manage their OA. Jean and Sylvia have completed a qualitative study of individuals’ experience in the ‘Employment Arthritis: Making it Work Program’, which is being followed by a second study of the impact of this program on employment and everyday life for people with rheumatoid arthritis. They have also done PaCER studies in cardiac care (APPROACH: Patient Engagement to Identify Priorities for Shared Decision-Making Tools) and seniors health (Meaningful Research for Meaningful Engagement).

Jean is a patient member of the CIHR Working Group developing ethics guidelines for engaging patients as collaborators in research. Jean has also been a member of the Bone and Joint Health Strategic Clinical Network Committee and the Innovation and Research Steering Committee (Alberta Health Services), the Canadian Institute for Health Research (CIHR) Standing Committee on Ethics.

Shelly Kupsch Interviewed by Patrizia Ranieri, Patient and Community Engagement Research (PaCER) and published in PERG “The Voice”.

PLEASE SHARE YOUR LIVED EXPERIENCE AND HOW THAT BROUGHT YOU TO PaCER.

I am a patient. I have survived a Pulmonary Embolism, a Cancer diagnosis, Emergency Surgery, and if that wasn’t enough, I endured a mid- foot amputation. You might say that I have been to “Hell & Back”. You’re right.

 As a Patient Advisor with the Calgary Community Paramedics Program, I attended the Alberta Health Services (AHS) Quality Summit in 2015. It was there that I was introduced to the PACER program. This fueled my passion to learn more about how to bring the patient’s voice to the health care experience. It took a couple of years, the tenacity of a pit bull and PaCER Director Dr. Nancy Marlett’s words to me, “My goodness you are persistent!” Simply put, it was my determination and a desire to learn more about patient-to-patient research that brought me to PaCER.

WHAT DID YOU LEARN FROM YOUR PaCER STUDY?

Our study is, “Understanding the Experience of Patients and their Companions with Managing a Cardiopulmonary Condition”. Working on this study reinforced that we as patients have a collective voice that we can empower to transform health care. There are several key things from the Internship that I consider crucial going forward for me as a patient researcher. Foremost is to always be mindful of the fact that the patient is the expert regarding their experience. Also important is to ensure that my peers, in particular the most vulnerable of the population, are protected, supported, and respected. And finally, that all patients who engage in research have informed consent. Those who choose to be part of it need to be confident that the research is ethically responsible, and they need to have a clear understanding of what the research entails.

WHAT’S NEXT FOR YOU AFTER GRADUATION?

First for me is a very long motorcycle ride, followed by an even longer fly-fishing trip! After that, my priority is to continue to volunteer with the AHS Critical Care SCN and to be involved in other projects. My goal will be to bring forward the skills I have developed as a PaCER to ensure that the patient voice is always front and centre and to remove the power dynamic whenever possible while conducting patient-to-patient research.

Shelly Kupsch is one of the first students to have received a PaCER professional development certificate through the University of Calgary’s Continuing Education. Here she shares her journey to becoming a PaCER patient researcher.