Canada's Strategy for Patient-Oriented Research (SPOR) Overview and Update - Presentation for the Workshop on Patient-Oriented Research ...

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Canada's Strategy for Patient-Oriented Research (SPOR) Overview and Update - Presentation for the Workshop on Patient-Oriented Research ...
Canada’s Strategy for Patient-
      Oriented Research (SPOR)
           Overview and Update
Presentation for the Workshop on Patient-Oriented Research
                 University of Saskatchewan

                    November 13, 2014

                 Nancy Mason MacLellan
              Manager, Major Initiatives, CIHR
Canada's Strategy for Patient-Oriented Research (SPOR) Overview and Update - Presentation for the Workshop on Patient-Oriented Research ...
CANADIAN STRENGTHS
                                                    Canada Excels In All Health Research Sectors

                                                                          Clinical Medicine
More Impact

                                                                                                                 Biology     Public Health and
                Average Relative Citations (ARC)

                                                                                                                             Health Services
World Average

                                                                                Biomedical Research                                       Psychology and
                                                                                                                                          Cognitive Sciences
Less Impact

                                                                    Less Specialized             World Average             More Specialized

                                                                                              Specialization Index (SI)                                        2
                                                   Source: The State of Science and Technology in Canada, 2012
Canada's Strategy for Patient-Oriented Research (SPOR) Overview and Update - Presentation for the Workshop on Patient-Oriented Research ...
CANADIAN STRENGTHS
   Strong Intl. Research Collaboration

                                                             3
Source: The State of Science and Technology in Canada 2012
Canada's Strategy for Patient-Oriented Research (SPOR) Overview and Update - Presentation for the Workshop on Patient-Oriented Research ...
CANADIAN CHALLENGES

                      4
SPOR – A SOLUTION
The Strategy for Patient-Oriented Research - a coalition of
 federal, provincial and territorial partners, including
      patients, researchers, health practitioners,
provincial/territorial health authorities, policy makers,
      academic health centres, charities, and the
 pharmaceutical sector, working together to generate
and translate high quality, relevant research into practice.

   Patient-oriented research aims to ensure that
  the right patient receives the right intervention
                  at the right time

                                                           5
PRINCIPLES
• Patients need to be involved in all aspects of the research to ensure
  questions and results are relevant and integrated into practice
• Decision-makers and clinicians need to be involved throughout the
  entire research process to ensure integration into policy and
  practice
• Funding under SPOR is based on a 1:1 matching formula with non-
  federal government partners to ensure relevance and applicability
• Effective patient-oriented research requires a multi-disciplinary
  approach
• SPOR is focused on first-in-human (and beyond) research designed
  to be transformative in nature and improve patient outcomes and/or
  the effectiveness and efficiency of the health care system
• SPOR is outcome driven and incorporates performance
  measurement and evaluation as integral components of the initiative

                                                                          6
CORE ELEMENTS

Support for People and Patient-Oriented
Research and Trials (SUPPORT) Units

SPOR Networks

Capacity development

Improving the clinical trials environment

Patient engagement

                                            7
SUPPORT UNITS
SPOR SUPPORT Units: provincial/territorial/regional centres providing support
and expertise to those engaged in patient-oriented research including a focus
on data access, methodological and research services, knowledge translation,
clinical trials and capacity development

STATUS UPDATE
•   Alberta, Manitoba, Ontario, Quebec,                        Data Platforms &
    Maritimes (PEI, NB, NS), and                                   Services
    Newfoundland & Labrador are at
    varying stages of implementation
                                              Consultation &
•   British Columbia to submit in fall 2014                                   Methods Support
                                                Research
                                                                              & Development
    and Saskatchewan to submit in winter        Services
    2015                                                         Collective
•   NWT received seed funding toward                             Priorities
    the development of a business plan                                        Health Systems,
                                                  Career
•   Dialogue continues with Nunavut and       Development in                       KT &
    Yukon to develop an appropriate way       Methods & HSR                   Implementation
    for them to intersect with SPOR
•   The SPOR SUPPORT Unit Council                         Real World Clinical
    has been established to link                                Trials
    representatives from across the
    SUPPORT Units
                                                                                           8
NETWORKS
   National research collaborations of patients, health professionals,
decision makers, health researchers and other stakeholders to generate
evidence and innovations designed to improve patient health and health
                             care systems

                                                                     9
NETWORKS
Transformational Research in Adolescent Mental Health: is co-funded by the Graham
Boeckh Foundation (GBF). The Network will use TRAM funds, participant resources and
leveraged investments in ways most likely to improve the mental health outcomes of 11-25 year
olds over the next five years.

      UPDATE: On June 13, 2014, CIHR and GBF formally announced the launch of
     ACCESS Canada, the successful TRAM Network in Youth and Adolescent Mental
     Health, led by Dr. Ashok Malla. Key members span six provinces and one territory.

Primary and Integrated Health Care Innovations: includes targeting individuals with complex
needs across their life course; showing capacity to evolve the network’s scope over time to
include age groups from children to older adults; and proposes multi-sector integration of
upstream prevention strategies and care delivery models.
        UPDATE: Network is being implemented using a phased approach. The 11
       member networks are currently working on their applications to become official
       members of the pan-Canadian Network. Spans all provinces and one territory.

  Networks in Chronic Disease: CIHR led a consultation to inform decisions of the National
  Steering Committee regarding the next network opportunities to be launched; the
  development of an opportunity for networks in chronic disease, through an open competition
  process was recommended by the National Steering Committee.

        UPDATE: A multi-phase funding opportunity for SPOR Networks in Chronic
                       Disease was launched in October 2014.
                                                                                                10
DEVELOPING CAPACITY
   To grow, support and sustain a collaborative, interdisciplinary and
innovative patient-oriented research environment capable of addressing
   evolving health care questions, contributing to enhancing patients’
        health care experience and improving health outcomes.

                                                                     11
CLINICAL TRIALS ENVIRONMENT
Through a partnership between CIHR, Canada’s Research-Based Pharmaceutical
Companies (Rx&D), and HealthCareCAN , the Canadian Clinical Trials
Coordinating Centre (CCTCC) was created to:
   • Measure, monitor and market clinical trial performance improvements
   • Leverage existing work on accreditation, harmonization and streamlining ethics
     reviews and common contracts
   • Develop a database of patient registries and consider national recruitment
     strategies
   • Attract international investment in clinical trials
 STATUS UPDATE
 •   A 12-member National Advisory Committee has
     been formed to provide advice to the Executive
     Committee.
 •   The Canadian Clinical Trial Asset Map
     (CCTAM) has been developed and will officially
     be launched in early 2015
 •   A Model Clinical Trials Agreement has been
     developed
 •   Work on an accreditation system for Canadian
     Research Ethics Boards continues
 •   A Working Group on Patient Registries has
     been formed                                                                      12
PATIENT ENGAGEMENT
    Occurs when patients meaningfully and actively collaborate in the governance, priority
    setting, and conduct of research, as well as in summarizing, distributing, sharing, and
                               applying its resulting knowledge

  STATUS UPDATE
  In response to the SPOR Patient Engagement Framework published in June 2014, the
  CIHR Citizen and Patient Engagement Implementation Strategy is introducing a number
  of cross-cutting mechanisms across three core areas:

      Governance and                          Capacity Building                         Tools and Resources
      Decision-Making
Ensuring that citizen and patient    Ensuring that resources are available         Ensure tools and resources are
engagement is embedded in            to facilitate the participation of citizens   available to citizens and patients to
CIHR programs/processes              and patients in CIHR                          help prepare them to effectively
                                     programs/processes and POR                    contribute to/participate in CIHR
                                                                                   programs/processes and POR
Ex. Patient and Citizen              Ex. Funding opportunities for the
Participant Pool; mechanism to       research community and knowledge              Ex. Orientation tool for boards and
capture patients and citizens in     users to form active collaborations           committees; development and roll-
the College of Reviewers; an         whereby citizens and patients are             out of a curriculum to prepare
incentives/compensation policy       engaged early and often in POR;               patients for engagement in
to compensate citizens and           development of a Citizen and Patient          research; development of a ‘jargon
patients participating in research   Engagement Community of Practice              buster’ to explain research terms
KEY BENEFITS
•   Improved health for Canadians by ensuring that the best research evidence
    moves into practice, enhancing the health care experience for patients and
    improving health outcomes for Canadians

•   Economic benefits by optimizing spending on health care systems,
    reinvesting resources where the evidence shows that these can have
    greatest impact, and attracting private investments in evaluative research

•   Driving innovation in patient-centred care in areas like e-health,
    implementation science and clinical practice

•   Linking provinces and territories by providing jurisdictions with
    opportunities to learn from each other, translating best practices in patient-
    centred care across Canada, and benefitting all Canadians

•   Reversing the decline in private sector clinical research by creating an
    environment that makes it easier to pursue clinical research in Canada

                                                                                     14
DISCUSSION and QUESTIONS?
- Appendix -
Networks in Chronic Disease
SPOR Networks in Chronic Disease
Definition of Chronic Disease: non-communicable, long-term disease
that is not passed from one person to another; it evolves over time,
often progressing in severity. Although a non-communicable chronic
disease may be prevented and can often be controlled, it is rarely
cured.

Focus of the Networks:
 Anchored on the challenges in Valley 1 research as it bridges to
  Valley 2.
 First-in-human and beyond research in chronic diseases that have
  resulted in areas of high disease burden.
 Networks are strongly encouraged to explore the opportunities for
  impact across multiple chronic diseases.
 No more than one network will be funded in any particular focus
  area.
 Successful networks are expected to include relevant international
  collaborations.                                                      17
SPOR Networks in Chronic Disease
Phase      Major Step         Key Points                           Timeline
  Important
Phase       dates:
      I Registration          •   Administrative only and will     December 2014
                                  be used to facilitate reviewer
                                  recruitment

           Letter of Intent   •   Reviewed by an international     January –
                                  panel of experts
                                                                   March 2015
                              •   Top 20 in the fundable range
                                  will be provided with a $50K
                                  development grant and will be
                                  invited to a strengthening
                                  workshop

Phase II   Strengthening      •   Mandatory for all successful     Spring 2015
                                  LOIs
           Workshop(s)
                              •   Workshop to help strengthen
                                  applications and encourage
                                  dialogue between applicants

Phase III Full Application    •   Full applications submitted      October 2015 –
                                  and reviewed
                                                                   January 2016
                              •   Four distinct chronic disease
                                  networks are funded

                                                                                    18
SPOR Networks in Chronic Disease

Funds Available:
 Each successful network will receive up to $12,500,000 over five
  years from CIHR.

 Up to 20 Development Grants will be funded through the Letter of
  Intent stage.
    • Each Development Grant will have a maximum value of
      $50,000.
    • Partner funds are NOT required at this stage.

 Up to 4 Networks will be funded through the Full Application
  stage.
    • CIHR will provide up to $12.45M over five years per Network.
    • Funds must be matched 1:1 with non-federal sources of
      funding.
                                                                     19
SPOR Networks in Chronic Disease

Network Composition:
The network must demonstrate that it will be pan-Canadian in scope,
i.e., that it includes Principal Applicants (key members), from a
minimum of one province or territory in three of the following four
regions:

    East – includes Newfoundland and Labrador, Nova
    Scotia, Prince Edward Island and New Brunswick
    Central – includes Quebec, Ontario and Manitoba
    West – includes Saskatchewan, Alberta and British
    Columbia
    North – includes Nunavut, Northwest Territories and
    Yukon

                                                                      20
SPOR Networks in Chronic Disease
Evaluation Criteria Categories for the LOI:
1.   Vision, rationale, priorities and added-value
2.   Potential for transformative impact
3.   Patient-oriented research program
      Quality of the proposed research program, including the evidence
       that sex and gender considerations have and will be taken into
       consideration.

4.   Strength of the team
      Appropriateness of the role described for the sex/gender champion.

5.   Patient-oriented research training and mentoring strategy
6.   Knowledge translation plan
7.   Partnership plan
8.   Governance
                                                                            21
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