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May 20 - Inaugural SPOR Summit
June 09 - SPOR Networks in Chronic Disease – Strengthening Workshop
SPOR Update is a report on the latest news and developments regarding Canada’s Strategy for Patient-Oriented Research.
Newfoundland and Labrador SUPPORT Unit Announced
On November 27, 2014, the Government of Canada and the Government of Newfoundland and Labrador, along with partner IBM, announced the launch of the Newfoundland and Labrador SUPPORT Unit. This SUPPORT Unit will receive a combined total of $19.8 million over five years from CIHR, the Government of Newfoundland and Labrador, and private-sector partner IBM.
SUPPORT Unit Council
A SPOR SUPPORT Unit Council has been established, comprised of the leads of each SUPPORT Unit (and where a SUPPORT Unit is not yet in place, a representative from that province/territory). This Council was created to provide an opportunity for information sharing and collaboration among SUPPORT Units throughout their development and implementation. The Council meets up to four times per year and focuses its attention on:
- Sharing information, best practices, and lessons learned;
- Discussing priorities and challenges;
- Identifying linkages across jurisdictions;
- Facilitating the collaboration among the SUPPORT Units; and
- Providing a venue for updates from other elements of SPOR.
The SUPPORT Unit Council last met on February 17, 2015.
First-Year Progress Update
Over the past year, tremendous progress has been made across Canada to implement the SPOR SUPPORT Units. SUPPORT Units have been established in Alberta, Manitoba, Ontario, the Maritimes, and are being implemented in Newfoundland and Labrador and Quebec. Business plans from both British Columbia and Saskatchewan are currently under review. The Northwest Territories have received seed funding to assist in the development of a business plan, and discussions are underway in both Nunavut and the Yukon regarding how SPOR can best be introduced into these Territories.
The first year of operations for the four established SUPPORT Units involved developing governance structures; creating core function platforms; recruiting staff; finalizing strategies for guiding patient engagement, training and capacity development, and performance measurement; and articulating work plans to manage day-to-day operations.
Contact information for each SUPPORT Unit can be found on the CIHR website.
Pan-Canadian Network in Primary and Integrated Health Care Innovations
Phase I is now complete and the initiative has transitioned into Phase II, which will see the 11 member networks attain formal membership and receive management and operations funding to facilitate their full engagement in the pan-Canadian Network. Phase II will also include funding for “Quick Strike” research projects to conduct rapid turn-around, time-sensitive research studies that align with the pan-Canadian Network’s research priorities.
Chronic Disease Networks
The SPOR Networks in Chronic Disease funding opportunity was launched in October 2014. The focus of the opportunity is in non-communicable chronic diseases where the disease is considered to be of high burden. The opportunity will be managed through a multi-phase process:
- Registration (deadline: December 2014)
- Letter of Intent (deadline: January 2015)
- Strengthening Workshop (June 9, 2015)
- Full Application (deadline: October 15, 2015)
Through the Letter of Intent phase, $1,000,000 will be available to fund up to 20 Development Grants. Through the Full Application phase up to four networks will be funded, each receiving up to $12,450,000 over five years from CIHR. Funds received from CIHR must be matched at a minimum of 1:1 with funding from non-federal sources.
Following the Workshop on SPOR Capacity Development held in March 2014, a draft SPOR Capacity Development Framework has been developed to articulate the vision and guiding principles for capacity development in patient-oriented research. This framework sets out what is needed in order to foster a culture where patients, researchers, health professionals, and other stakeholders are empowered, trained, and prepared to learn from one another and work collaboratively. It is intended to apply to all SPOR elements, including the SUPPORT Units and SPOR Networks.
Improving our Competitiveness in Conducting Clinical Trials
Canadian Clinical Trials Coordinating Centre
The Canadian Clinical Trials Coordinating Centre (CCTCC) website has now been launched. The website is currently in its development phase and, over the course of the next few months, will be updated with specific sections for researchers, industry, and patients.
To learn more about the CCTCC and sign up for its newsletter, please visit the CCTCC website.
Canadian Clinical Trials Asset Map
As part of the SPOR efforts to improve the environment for clinical trials in Canada, work is underway to create the Canadian Clinical Trials Asset Map (CCTAM).
The Canadian Clinical Trials Asset Map (CCTAM) is a unique, robust, searchable Web-based database designed to communicate Canada’s clinical research strengths to all stakeholders, including clinical trial sponsors, to help reverse the decline in clinical trials activity in Canada. The CCTAM stems from the Action Plan to help attract more clinical trials to Canada spearheaded by the Canadian Institutes of Health Research (CIHR), Canada’s Research-based Pharmaceutical Companies (Rx&D), and HealthCareCAN. The CCTAM is overseen by the CCTCC.
Presently, the CCTAM is being tested by various stakeholders in the clinical trials field. Initial data collection, which has leveraged existing asset maps, is underway. The launch of the CCTAM is planned for early-mid 2015. For more information and updates on the CCTAM, please contact Elena Aminkova, CCTAM Project Manager, at firstname.lastname@example.org or by calling 1-844-452-5818.
Patient Engagement – Collaboration Grants Funding Opportunity
The Patient Engagement - Collaboration Grants funding opportunity was launched on November 13, 2014, to help Canadian health researchers to engage patients, citizens, and health care professionals as active partners in patient-oriented research. This funding opportunity is the first step in a larger patient engagement funding strategy. The deadline for applications was January 13, 2015.
The objectives of the Collaboration Grants are:
- to identify and implement inclusive engagement mechanisms, processes, and approaches that value patient perspectives, experiences, and skills throughout the research process; and
- to facilitate opportunities for researchers and knowledge users, including patients, to work together to identify problems and gaps, set priorities for research, and produce and implement solutions together.
Upcoming Patient Engagement Resources
In response to the SPOR Patient Engagement Framework, CIHR is focusing on the development of two resources during the first half of 2015:
Citizen and Patient Participant Pool
This resource will strengthen CIHR’s ability to engage a wider variety of informed patients, caregivers, and citizens. The pool will draw participants from different geographic and socio-economic groups and will cover important diversity areas such as age, gender, culture, and under-represented patient groups. The Pool will also support the participants’ capacity to make meaningful contributions in a variety of roles.
Patient Preparation Curriculum
This resource will address the gap in knowledge about effective models and resources to prepare patients for meaningful and effective engagement in health research. The curriculum will consider how to create safe environments for learning, ensuring honest interaction, cultural competence, and mutual understanding.
The curriculum development process will be informed by national and international scans to identify relevant examples of curricula/training approaches used to engage patients in collaborative research. A co-building workshop in March 2015 will bring together a group of patients, researchers, clinicians, and other citizen and patient engagement experts to co-design and develop the curriculum’s key elements, including its topic areas.
Jargon Buster Glossary
CIHR, as a partner in SPOR, has released a health research terminology Jargon Buster, which provides plain language definitions of health research terms. The glossary is intended for non-researchers, citizens, patients and caregivers involved in both patient-oriented research and in other engagement activities, such as in CIHR committees.
SPOR National Steering Committee
The SPOR National Steering Committee met on October 27, 2014 to discuss the recent progress on the elements of SPOR, including the SPOR SUPPORT Units, Networks, Improving our Competitiveness for Conducting Clinical Trials, and Patient Engagement. The Committee provided feedback to guide the next steps for a number of ongoing plans and activities.
SPOR Café Scientifique
On the evening of October 27, 2014, CIHR hosted a Café Scientifique event at the National Arts Centre, in Ottawa, to share experiences that illustrate the best practices, challenges, and benefits of patient engagement in patient-oriented research. A panel of experts provided a “SPOR 101” overview, discussing what it means for patients to be involved in research, how patient-oriented research focuses on priorities that are important to patients, and how engaging patients can lead to improvements in treatments and practices. The evening concluded with an informal Q & A session with the panelists.
The panel was moderated by Dr. Stephen Robbins, Scientific Director, CIHR Institute of Cancer Research, and included:
- Dr. Cy Frank, CEO, Alberta Innovates Health Solutions
- Mr. Vincent Dumez, Patient and Co-Director, Collaboration and Patient Partnership Directorate at the Faculty of Medicine, University of Montreal
- Dr. Bonnie Stevens, Professor, Faculties of Nursing and Medicine at the University of Toronto
- Mr. Christian Whalen, Deputy Advocate and Senior Legal Counsel, Office of the Child and Youth Advocate, Province of New Brunswick
Upcoming SPOR Summit
The inaugural SPOR Summit will be held in Ottawa on May 20, 2015. It will bring together SPOR stakeholders including patients, relevant federal/provincial/territorial ministries, funding partners, researchers, and clinicians to explore and share their experiences in promoting patient-oriented research. The Summit will provide an opportunity to create synergies and facilitate greater collaboration amongst stakeholders.
The event will showcase early successes in SPOR and explore challenges and opportunities realized during its implementation phase. Participants will learn from international experts on subjects such as patient engagement and capacity development for patient-oriented research.
The Summit will be held in conjunction with a meeting of the SPOR National Steering Committee on Tuesday, May 19, 2015 and a meeting of the SPOR SUPPORT Unit Council on Thursday, May 21, 2015.
Participation in the Summit will be by invitation only. For more information, please contact Gemma Hollingsworth.
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