The Clinician Voice
“People are trained to be anatomical specialists, yet diseases of energy metabolism are systemic diseases that affect organs of the highest energy demand, like the brain, eyes, kidney, heart and muscles. So, these patients have multiple clinical problems with different organs and this is very befuddling to the current clinical practitioner philosophy. We have to re-orient the way we look at disease from the anatomical approach to a more holistic and general approach.” – Dr. Douglas C. Wallace (Children’s Hospital of Philadelphia)
“Patients, families and caregivers need information and resources to better understand this complicated disease. They also want to have a voice in the future direction of research, therapeutics and policy to help ensure the priorities and outcomes will benefit patients.” – Blaine Penny (Co-founder and CEO, MitoCanada)
Patient Engagement and Patient Oriented Research (POR)
A core feature of mitoNET is its integration of patient voices into its priority setting, activities, and knowledge mobilization. MitoCanada has been an active partner in the development of mitoNET and has helped develop our Patient-Oriented Research (POR) approach. To highlight our patient-inclusive philosophy, mitoNET adopts the definition of patients provided by CIHR’s Strategy for POR (SPOR): “individuals with personal experience of a health issue and informal caregivers, including family and friends”. For more information the CIHR SPOR patient engagement framework, click here: http://www.cihr-irsc.gc.ca/e/48413.html
mitoNET will design a patient engagement framework based on a three pronged approach:
Patient Engagement - Engender a culture of openness and transparency in information sharing among researchers and patients. Engage patients from the beginning of research initiatives from priority setting, through research activity, to analysis and impact creation. Use a wide variety of engagement vehicles that range from patient focus groups and advisory committees, to co-producers of knowledge, to patient auditors of decision-making processes and knowledge transfer.
Patient Partnership - Our partnership approach will engender a culture of patient partners as equal team members across mitoNET. To achieve active collaboration between patients and researchers, health care providers and decision-makers for patient-oriented research, each stakeholder must have adequate training and clearly understand the respective roles, challenges, and benefits of this approach.
Patient Leadership - PPAC is composed of patient leaders with significant lived experience with mitochondrial disease, exceptional competencies as experienced patient advisors in the healthcare system and in research, and the ability to mobilize and support patient engagement in collaboration with the diverse research network of mitoNET. Will have leadership roles on the Board and Research Management Committee (RMC).
Effective collaboration with patients, families and caregivers will ensure a pan-Canadian representation that is conscious of the equity and diversity needed to ensure that a broad range of lived experience of mitochondrial disease is included in our research network.
MitoCanada will maintain close ties with all aspects of mitoNET’s efforts, with representation on the Board, Research Management Committee (RMC) and co-chair of the Patient Partners Advisory Committee. mitoNET brings its influential network to engage patients in research, clinical trials and technology development, new policy development, connect patients and families with each other for support, and foster patient leadership as public champions for awareness and action.
The Patient voice will help contribute to mitoNET’s research agenda in the following ways:
establish emerging standards of care;
understand the clinical manifestations of disease progression (i.e. what clinicians should look for);
identify and prioritize research projects and health outcome measures that may be used to assess the benefits of a therapy;
disseminate knowledge at the community level; and
share patient resources with mitoNET
Patient Partner Advisory Committee (PPAC)
The inaugural Committee was selected based on a combination of interest indicated from the September Mito2017 Conference, background/lived experience and recommendations from mitoNET and MitoCanada. Below outlines a brief introduction of each Committee Member.
Julie Drury (Committee Co-chair, Ottawa, ON) – Mito mom of the late Kate Drury, inaugural Chair of the Minister’s Patient and Family Advisory Council for Ontario and strategic policy advisor and Board member of MitoCanada.
Eddy Nason (Committee Co-chair, Toronto, ON) - Assistant Director Ontario SPOR SUPPORT Unit Membership responsible for overseeing a broad range of activities relating to the administration, management, evaluation and communications activities of this new federal-provincial initiative.
Lisa Krupa (Thunder Bay, ON) – Mito patient and background/experience in research and studies of biomolecular science, psychology, nursing and medicine.
Naomi Laliberte-Robinson (Montreal, QC) – Mito patient and mom of two affected children (9 and 7) diagnosed in 2014.
Marilyn Macaulay (Cornwall, ON) – Mito mom and caregiver who lost two daughters to mitochondrial diseases in 1982 and 1984 and her family is presently taking part in a research study to identify biomarkers for bipolar disorder. Marilyn is also an Advisor for the Embrace Project, a Changing Care project funded by the Change Foundation, at Cornwall Community Hospital
Sarah Penny (Calgary, AB) – Mito mom of 14-year-old son and active ambassador and fundraiser for MitoCanada.