Patient Research Partner Opportunities with SkIN Canada
SkIN Canada is excited to welcome patient research partners to shape how research on skin diseases will be fostered across Canada. This is different from being a research subject. A research subject participates in research by agreeing to be part of an experiment whereas a Patient Research Partner works with researchers to help them understand patient perspectives as they:
- Build research networks
- Create and design biobanks
- Organize clinical trials for skin diseases
- Train students and early career researchers to work with patients and on issues that are important to patients, and
- Help share the results of research with patients and the public.
Role of Patient Research Partners in SkIN Canada
Patient research partners will be asked to:
- Provide insights on patient & public perspectives and prioritizing research questions
- Provide advice on planning, implementing, and evaluating the Network activities, including the Patient Engagement Workshop and grant competitions
- Participate and contribute in face-to-face and telephone meetings to provide specific insights based on their experiences (or that of people they represent) in relation to a specific skin condition
- Review documents related to Network activities and submitted research proposals
- Review documents to be shared with the general public and offer suggestions for revisions
- Contribute to dissemination of the results of Network-related activities and research by reviewing strategies and materials
- Provide feedback and recommendations for further work to promote patient engagement
- Provide support in recruiting additional patient research partners, as needed
Expectations of Patient Research Partners
- Value the advancement of skin research and be interested in contributing to research
- Timely respond to emails and participation during face-to-face or telephone meetings
- Respect diversity and different opinions
- Work collaboratively with other team members, as well as other Network committees
- Respect and maintain confidentiality
- Have a working understanding of the purpose and general concepts of research – please note that CSPA will provide training throughout the year and at the annual conference & patient engagement workshop.
- Screening interview by phone
- Sign the confidentiality agreement
Should you wish to receive an honorarium, SkIN Canada will provide one based on the hours you have participated, according to the patient research partner compensation and reimbursement policy.
The CSPA will support Patient Research Partners to expand their knowledge about research. You don’t have to know everything about how research works in order to make a valuable contribution! The CSPA will provide updates and training to patient research partners as part of PAC meetings and at the annual conference & patient engagement workshop.
If you are interested in participating, please fill out this questionnaire by June 21, 2020.
Call for Expressions of Interest
Are you interested in how research questions are chosen, how research is done and how patients can contribute to research? There are several opportunities to be a patient research partner with SkIN Canada. The CSPA is looking for 14 Patient Research Partners to help shape skin disease research in Canada.
Patient Advisory Council
- Chair: Rachael Manion, Executive Director, Canadian Skin Patient Alliance
- Patient Research Partners: 6 patients (3 of whom will also serve on the Steering Committee)
The Patient Advisory Council (PAC) will help build partnerships among patients, the public, and SkIN Canada to promote patient engagement in activities and research supported by the Network. The PAC will ensure that the patient voice is present throughout the activities of SkIN Canada by providing advice relating to:
- Prioritizing research questions
- Planning, delivery, and evaluation of SkIN Canada activities
- Disseminating research results from SkIN Canada projects
Roles and responsibilities of Patient Research Partners on the PAC
The primary role of patient research partners is to provide the public and patient perspective into the Network’s activities and research projects.
PAC Patient Research Partner Commitments
The PAC members meet at least three times a year (face-to-face at an annual meeting and twice by teleconference). Depending on the Network activities, the group members may need to communicate more frequently via email or teleconference.
It is estimated that PAC members will spend 1 hour per month on Network activities, plus 2 hours every 3 months for those members of the PAC who are also on the Steering Committee members. Patient Research Partners are also expected to attend the annual conference & patient engagement workshop (usually June).
Terms of PAC members are two years but can be renewed.
- Chair: Dr Youwen Zhou
- Patient Research Partner: 1 patient
Oversee the development and operations of the Biobanking Platform, which includes a biobank registry, a library of biobanking resources, and virtual biobanks
Who else is on the Biobanking Committee?
- Experts in policy, law & ethics (2)
- Biobank leaders (3)
Biobanking Committee Patient Research Partner Commitments
It is estimated that Biobanking Committee members will spend 1 hour per month on Network activities. Patient Research Partners are also expected to attend the annual conference & patient engagement workshop (usually June).
Canadian Network for Skin disease Trials (C-NeST) Management Committee
Oversee development of the partnership of clinical investigator sites, the data platform, standard operating procedures (SOPs), agreements, and submitted proposals.
Who else is on the C-NeST Management Committee?
- International partner (UK)
- Academic & community-based clinical investigators (3)
- Research administrator / Coordinator
C-NeST Management Committee Patient Research Partner Commitments
It is estimated that C-NeST Management Committee members will spend 1 hour per month on Network activities. Patient Research Partners are also expected to attend the annual conference & patient engagement workshop (usually June).
Knowledge Translation Committee
Knowledge Translation Committee
- Chair: Dr Jeremy Grimshaw
- Patient Research Partner: 1 patient
Provide guidance on the development and implementation of strategies to disseminate the research outputs of Network members to knowledge users.
Who else is on the Knowledge Translation Committee?
- Knowledge user (nurse)
- Knowledge user (clinician)
- Knowledge user (policymaker)
- Knowledge user (researcher)
Knowledge Translation Committee Patient Research Partner Commitments
It is estimated that Knowledge Translation Committee members will spend 1 hour per month on Network activities. Patient Research Partners are also expected to attend the annual conference & patient engagement workshop (usually June).
Develop capacity building strategies, including leadership opportunities, curriculum development for the annual Trainee Boot Camp, and review proposals for trainee knowledge exchanges and travel awards.
Who else is on the Training Committee?
- Graduate student / fellow
- Resident physician / fellow
- Early career researcher
Training Committee Patient Research Partner Commitments
For each primary focus area, the co-chairs will coordinate the priority setting workshop, solicit proposals for Virtual Biobanks and Team Development grants, represent their community on the Steering Committee, and serve in turn as Network ambassadors to their communities.
Working Group Patient Research Partner Commitments
Each Working group will meet at least four times per year. Patient Research Partners are also expected to attend the annual conference & patient engagement workshop (usually June).
Inflammatory Skin Conditions Working Group
Wound Healing, Skin Fibrosis and Regeneration Working Group
Skin Cancer Working Group