Jeff Latimer (Jane E. Aubin) - SPOR - Patient Engagement and Knowledge Translation

SPOR – Patient Engagement and

Knowledge Translation Community for Brain Development

October 6, 2014

Jane E. Aubin, Ph.D.

Chief Scientific Officer and Vice-President, Research,

Knowledge Translation and Ethics

OBJECTIVES

The objectives of today’s presentation are to:

• give an overview of SPOR that will include specific

attention to the Patient Engagement Framework and

CIHR Implementation Plan; and

• outline the KT component of SPOR and highlight

CIHR’s KT activities.

Canada’s Strategy for Patient-Oriented

Research

Patient-oriented research aims to ensure that the right

patient receives the right intervention at the right time

• SPOR is a national coalition of federal, provincial and territorial partners

(patients, caregivers, patient advocates, provincial health authorities,

academic health centres, charities, pharmaceutical sector, etc.) dedicated

to the integration of research into care

• The objective of the Strategy is to foster evidence-informed health care by

evaluating innovative diagnostic and therapeutic approaches and bringing

them to the point of care

• Measurable results are improved health outcomes through greater quality,

accountability and accessibility of care

• A National Steering Committee serves as the oversight body for SPOR –

members represent patients, health research funders, universities, health

care organizations and authorities, clinical researchers, health charities,

industry and government (F/P/T)

SPOR 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 research requires a multidisciplinary approach • SPOR is focused on first-in-human 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

SPOR CORE ELEMENTS

Support for People and Patient-Oriented

Research and Trials (SUPPORT) Units

SPOR Networks

Capacity development

Improving the clinical trials environment

Patient engagement

SPOR 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

Collective Priorities

Data Platforms & Services

Methods Support & Development

Health Systems, KT &

Implementation

Real World Clinical Trials

Career Development in Methods & HSR

Consultation & Research Services

• Alberta, Manitoba, Ontario, Quebec,

Maritimes (PEI, NB, NS), and

Newfoundland & Labrador have been

approved and are at varying stages of

implementation

• It is anticipated that final business

plans for both British Columbia and

Saskatchewan will be submitted in fall

2014

• Dialogue continues with each of the

Territories to develop an appropriate

way for them to intersect with SPOR

• The SPOR SUPPORT Unit Council

has been established to link

representatives from across the

SUPPORT Units

STATUS UPDATE

UPDATE: A SPOR SUPPORT Unit KT working group has been convened to

enable sharing of best practices and support collaboration between KT leads

within SUPPORT Units.

SPOR NETWORKS

SPOR Networks: national 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

OBJECTIVES: • Establishing priorities and developing a nation-wide

agenda of outcomes-oriented research

• Developing and implementing evidence-informed

practices, policies, services, products and programs

to improve patient outcomes, access to care and

quality, efficiency and effectiveness of health care

• Accelerating the translation of existing and new

knowledge into clinical applications, practice and

policy

• Strengthening the capacity to conduct patient-

oriented research through training and mentoring

initiatives

SPOR Research and Knowledge

Translation Networks

SPOR 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.

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.

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: On June 12-13, 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.

UPDATE: Network is being implemented using a phased approach. Member

networks are currently working on their applications to become official members of

the pan-Canadian Network.

UPDATE: A multi-phase funding opportunity for SPOR Networks in Chronic

Disease will be launched in October 2014.

DEVELOPING CAPACITY SPOR Capacity Development: 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.

• Workshop held in Toronto on March

31, 2014 with a spectrum of POR

stakeholders including patients and

representatives from SUPPORT

Units, academia, NAPHRO and

CIHR.

• A draft framework has been

developed: articulates the vision and

guiding principles and provides key

considerations for what is needed to

foster a culture where patients,

researchers, health professionals and

other stakeholders are empowered,

trained and prepared to learn from

each other and work collaboratively.

STATUS UPDATE

SPOR PATIENT ENGAGEMENT 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

• Patient engagement has occurred

throughout the development and

implementation of SPOR

• The SPOR Patient Engagement

Framework was published in June

2014.

• A Citizen and Patient Engagement

(CPE) Strategy is being

implemented and features a

number of cross-cutting

mechanisms that operationalize

the SPOR Patient Engagement

Framework and fulfill CIHR’s

organizational goals for citizen and

patient engagement

STATUS UPDATE

PURPOSE AND RATIONALE

• Patient engagement is a core element under SPOR and efforts to bolster citizen and patient engagement have become more prominent within CIHR’s Signature Initiatives and Institute-led initiatives.

• The SPOR National Steering Committee requested that CIHR develop a framework and strategy in the area of patient engagement in order to achieve active and fruitful collaborations between patients, researchers, health care professionals, decision-makers and other stakeholders throughout the entire health research continuum.

• Strategic Initiatives Branch (SIB) is leading the operationalization of CIHR’s Citizen and Patient Engagement (CPE) Implementation Strategy which introduces cross-cutting actions in response to the SPOR Patient Engagement Framework and a series of consultation exercises.

12

VISION

Patients are active partners in health research that will lead to improved

health outcomes and an enhanced health care system

OBJECTIVE

The SPOR Patient Engagement Framework is designed to establish key

concepts, principles and areas for patient engagement to be adopted by all

SPOR partners.

DESIRED

OUTCOMES

Inclusive

mechanisms

and

processes

are created

Respectful

collaboration is

established

amongst patients,

researchers and

health care

providers

The experiential

knowledge of

patients is valued

as evidence as part

of the research

process

Research is

informed and co-

directed by

patients

Common goal of

timely

implementation

of quality

research

GUIDING

PRINCIPLES Inclusiveness Support

Mutual

Respect Co-building

CORE

AREAS

Governance and

Decision-Making Capacity Building Tools and Resources

SPOR Patient Engagement Framework

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CPE Implementation Strategy – Activities GOVERNANCE &

DECISION-MAKING

CAPACITY BUILDING TOOLS AND RESOURCES

Development of a Patient and

Citizen Participant Pool

Development/launch of a

funding opportunity (FO) to

establish a national patient

engagement priority-setting

organization

Development of online

Orientation resources

Development of a mechanism to

capture citizens and patients in

the College of Reviewers

Development/launch of an FO for

the research community to

engage citizens and patients in

research

National roll-out of the Training

Curriculum for citizens and

patients to better prepare them

to contribute to research

Development and

implementation of an

Incentives/Compensation for to

facilitate citizen and patient

engagement in CIHR’s activities

Development/launch of an FO for

the development of a Training

Curriculum to prepare citizen and

patients to contribute to research

Development of a CIHR Jargon

Buster

Ensuring participation of citizens

and patients in governance of

major initiatives

Development of a CPE

Community of Practice

SPOR 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

Valley 1 Valley 2

Basic Biomedical

Research

Clinical Science

& Knowledge

Clinical Practice

& Health-care

Decision Making

Community-based

Primary Heath-

care

Patient-Oriented

Research

Support Units

Research Networks

(Mental health etc.)

Evidence-

informed

Health-care

Epigenetics

Personalized

Medicine

Strategy for Patient-Oriented Research

SPOR-1st in human and beyond

Basic science,

preclinical and

animal studies

CIHR’s KT Activities

Knowledge Synthesis: • Objectives:

• To map the state of knowledge on a topic • Inform knowledge users about existing or lack of evidence to inform their

decisions • Guide researchers to new avenues for primary research

• Examples: • Pain in people with development disabilities: a scoping review • Realist Synthesis of Self-Management Interventions for Disadvantaged

Populations with Chronic Conditions • Available funds:

• Synthesis: $100,000 for up to 1 year • Scoping review: $50,000 for up to 1 year • Applications accepted 2 times per year in Spring and Fall

Knowledge to Action: • Objectives:

• To accelerate KT by linking researchers and knowledge-users to move knowledge into action and to learn about knowledge application through the process

• Examples: • Bridging the Knowledge-to-Action Gap in Primary Care for Eating Disorders:

Implementing and Evaluating a Training Program for Health Care Professionals • Participatory Policy Intervention to Promote School-Based Physical Activity

• Available funds: • $200,000 over 2 years • Applications accepted annually in October

CIHR’s KT Activities Continued

Partnerships for Health System Improvement (PHSI): • Objectives:

• To support teams of researchers and decision makers interested in conducting applied health research that will be useful to health system managers and/or policy makers and strengthens the Canadian health care system

• Examples: • Reducing inequities in access to and use of prenatal care in the Winnipeg

Health Region through health system improvement • Injecting Evidence into Health Policy Coverage: Working with the Media

• Available funds: • $400,000 for up to three years from CIHR (applicants find a minimum of 20% of

total grant budget from other partners, financial or in-kind contributions) • Applications accepted annually in November

Monitor

Knowledge

Use

Sustain

Knowledge

Use

Evaluate

Outcomes

Adapt

Knowledge

to Local Context

Assess

Barriers to

Knowledge Use

Select, Tailor,

Implement

Interventions

Identify Problem

Identify, Review,

Select Knowledge

Products/

Tools

Synthesis

Knowledge

Inquiry

KNOWLEDGE CREATION

Graham et al., 2006

The Knowledge to Action Process

The Action Cycle

• The action cycle is the process by which knowledge is

implemented

• It represents phases of activities that are needed for

knowledge applications to achieve a deliberately

engineered change in groups that vary in size and

setting

The 7 Phases of the Action Cycle Id

en

tify

ing

KTA

Ga

ps

An ID of knowledge needs is the starting point of knowledge implementation.

Ad

ap

tin

g K

no

wle

dg

e

Any knowledge must be adapted to local settings to ensure it is relevant and feasible.

Asse

ssin

g

Ba

rrie

rs/Fa

cilit

ato

rs

Methods to assess barrier and facilitators to knowledge use include:

•Delphi Procedure

•Qualitative Approaches

•Statistical Analysis

Se

lecti

ng

, Ta

ilo

rin

g,

Imp

lem

en

tin

g I

nte

rve

nti

on

s

Interventions need to be tailored to specific barriers for change.

The 7 Phases of the Action Cycle Cont’d M

on

ito

rin

g K

no

wle

dg

e U

se

Knowledge use can be conceptual, instrumental or persuasive.

Eva

lua

tin

g O

utc

om

es

Strategies for evaluating knowledge implementation should use explicit, rigorous methods and should consider both qualitative and quantitative methodologies.

Su

sta

inin

g K

no

wle

dg

e U

se

The continued implementation of evidence over time.

This discussion should include:

• Budgetary Resources

• Human Resources

• Health Care System