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Patients’ Lives
and
Knowledge Translation
Ian D Graham
Vice President, Knowledge Translation and Public Outreach Portfolio
Canadian Institutes of Health Research
TEACH Workshop
NYC
August 11 2011
Biases and Disclosures
•
•
•
•
•
Position: VP KT, CIHR; Associate Prof, SON
Training: medical sociologist, Postdoc- clin epi
Methods: mixed methods- qual + quant
Research interests: KT science
Philosophy: social construction of knowledge;
pragmatist
Biases and Disclosures
• Relationships:
– no industry funding or relationships
– co-editor, KT in Health Care
• Royalties go to CIHR KT fellowship fund
– co-editor, Evaluating the Impact of
Evidence-based Practice
Session Objectives
• To improve understanding of what KT is
• To be able to distinguish between end
of project KT and integrated KT
• To appreciate the relationships between
KT and patients’ lives
Take Home Messages
1.
2.
3.
4.
Knowledge Translation is about getting evidence into
practice
KT is ultimately about improving the lives of patients
Integrated KT research is about meaningful
engagement of knowledge-users (patients) in
research/QI
Engagement can include involvement in:
-determining the research/QI question
-deciding on methods and facilitating data collection and
outcome measure selection
-interpreting findings and crafting messages
-dissemination and application
Take Home Messages Con’td
5.
6.
Patients are able to participate in the steps of an
iKT approach if researchers plan for this AND
engage them
Partnerships in KT, as in clinical practice, should be
premised on respect and on developing a process
to ensure that it happens and can be sustained
What is Knowledge Translation?
Knowledge translation is about:
• Making users aware of knowledge and facilitating their
use of it to improve health and health care systems
• Closing the gap between what we know and what we do
(reducing the know-do gap)
• Moving knowledge into action
Knowledge translation research (KT Science) is about:
• Studying the determinants of knowledge use and
effective methods of promoting the uptake of knowledge
What is Knowledge Translation?
KT is a dynamic and iterative process that includes
synthesis, dissemination, exchange and ethically
sound application of knowledge to improve (the)
health (of Canadians), provide more effective health
services and products and strengthen the health
care system.
This process takes place within a complex system of
interactions between researchers and knowledge users which
may vary in intensity, complexity and level of engagement
depending on the nature of the research and the findings as
well as the needs of the particular knowledge user.
KT is ultimately all about improving
the patients’ lives
KT is a dynamic and iterative process that
includes synthesis, dissemination,
exchange and ethically sound application
of knowledge to improve the
lives of patients….
What is Knowledge Translation?
Knowledge synthesis
Dissemination
Knowledge exchange
Ethically sound application of
knowledge
 The contextualization and integration of research findings
of individual research studies within the larger body of
knowledge on the topic.
 Synthesis is a family of methodologies for determining
what is known in a given area or field and what the
knowledge gaps are.
 Involves identifying the appropriate audience for the
research findings, and tailoring the message and medium to
the audience.
 Refers to the interaction between the knowledge user and
the researcher resulting in mutual learning, it encompasses
the concept of collaborative or participatory, action oriented
research where researchers and knowledge users work
together as partners to conduct research to solve knowledge
users’ problems (Integrated KT).
 The iterative process by which knowledge is actually
considered, put into practice or used to improve health and
the health system.
 KT activities must be consistent with ethical principles and
norms, social values as well as legal and other regulatory
frameworks
What is Knowledge Translation?
Knowledge synthesis
Dissemination
Knowledge exchange
Ethically sound application of
knowledge
 The contextualization and integration of research findings
of individual research studies within the larger body of
knowledge on the topic.
 Synthesis is a family of methodologies for determining
what is known in a given area or field and what the
knowledge gaps are.
 Involves identifying the appropriate audience for the
research findings, and tailoring the message and medium to
the audience.
 Refers to the interaction between the knowledge user and
the researcher resulting in mutual learning, it encompasses
the concept of collaborative or participatory, action oriented
research where researchers and knowledge users work
together as partners to conduct research to solve knowledge
users’ problems (Integrated KT).
 The iterative process by which knowledge is actually
considered, put into practice or used to improve health and
the health system.
 KT activities must be consistent with ethical principles and
norms, social values as well as legal and other regulatory
frameworks
What is Knowledge Translation?
Knowledge synthesis
Dissemination
Knowledge exchange
Ethically sound application of
knowledge
 The contextualization and integration of research findings
of individual research studies within the larger body of
knowledge on the topic.
 Synthesis is a family of methodologies for determining
what is known in a given area or field and what the
knowledge gaps are.
 Involves identifying the appropriate audience for the
research findings, and tailoring the message and medium to
the audience.
 Refers to the interaction between the knowledge user and
the researcher resulting in mutual learning, it encompasses
the concept of collaborative or participatory, action oriented
research where researchers and knowledge users work
together as partners to conduct research to solve knowledge
users’ problems (Integrated KT).
 The iterative process by which knowledge is actually
considered, put into practice or used to improve health and
the health system.
 KT activities must be consistent with ethical principles and
norms, social values as well as legal and other regulatory
frameworks
What is Knowledge Translation?
Knowledge synthesis
Dissemination
Knowledge exchange
Ethically sound application of
knowledge
 The contextualization and integration of research findings
of individual research studies within the larger body of
knowledge on the topic.
 Synthesis is a family of methodologies for determining
what is known in a given area or field and what the
knowledge gaps are.
 Involves identifying the appropriate audience for the
research findings, and tailoring the message and medium to
the audience.
 Refers to the interaction between the knowledge user and
the researcher resulting in mutual learning, it encompasses
the concept of collaborative or participatory, action oriented
research where researchers and knowledge users work
together as partners to conduct research to solve knowledge
users’ problems (Integrated KT).
 The iterative process by which knowledge is actually
considered, put into practice or used to improve health and
the health system.
 KT activities must be consistent with ethical principles and
norms, social values as well as legal and other regulatory
frameworks
At CIHR we consider two
broad categories of KT
End of grant KT
Integrated KT
The researcher develops and implements
a plan for making knowledge users aware
of the knowledge generated through a
research project
The researcher engages potential
knowledge users as partners in the
research process.
Requires a collaborative or participatory
approach to research that is action
oriented and is solutions and impact
focused.
What is end of grant KT?
A broad spectrum of activities including:
Diffusion (let it happen)
Dissemination (help it happen)
(activities that tailor the message and medium to a
specific audience)
Application* (make it happen)
(moving research into practice in cases where the
strength of evidence is sufficient)
*NB knowledge application is often a fundamental
component of integrated KT as well
Patient Lives and End of Grant KT
When appropriate
– Explicitly targeting findings to
patients/public
– Using plain and culturally appropriate
language
– Using appropriate media to reach
patients/public (e.g. social media, print and
broadcast media, patient decision aids)
The knowledge to action cycle is one
framework to guide the application or implementation
of knowledge
Monitor
Knowledge
Use
Select, Tailor,
Implement
Interventions
Assess Barriers/
Supports to
Knowledge Use
from: Graham et al:
Lost in Knowledge Translation: Time for a Map?
KNOWLEDGE CREATION
Knowledge
Inquiry
Synthesis
Adapt
Knowledge
to Local Context
Evaluate
Outcomes
Products/
Tools
http://www.jcehp.com/vol26/2601graham2006.pdf
Identify Problem
Identify, Review,
Select Knowledge
Sustain
Knowledge
Use
What is integrated KT?
• a way of doing research
• collaborative, participatory, action-oriented, community
based research, co-production of knowledge, mode 2
research
• involves engaging and integrating knowledge users
into the research process
• Knowledge users can be:
– Policy- and decision-makers from the community to
the federal level, researchers, industry, clinicians,
the public, and patients
– Investigators from different disciplines, teams,
countries
What is integrated KT?
Knowledge users and researchers (knowledge creators)
work together to:
 shape the research questions
 interpret the study findings and craft messaging
around them
 move the research results into practice
In our view – this is the minimum requirement for
conducting integrated KT
What is integrated KT?
In addition, knowledge users and researchers (knowledge
creators) can work together to:
 shape the research questions
 decide on the methodology
 help with data collection, tools development,
selection of outcome measures
 interpret the study findings and craft messaging
around them
 move the research results into practice
 widespread dissemination and application
Why integrated KT?
The theory: through partnerships, the research is
strengthened:
• research can be more solutions-based because there
is an end-user involved in developing the research
question
• research can have more impact because the enduser is engaged and interested, ready for results and
willing to move those results into practice because
they are of direct relevance to their day-to-day lives
• the same theory applies to participatory QI
approaches and individualized care
Why integrated KT?
The theory: through partnerships, the research is
strengthened:
• by participating in the research process, end users
may have greater trust in the results and researchers
• integrated knowledge translation with patients, where
they are consulted, informed and engaged from
beginning to end, has the potential to improve
treatment and health outcomes
• the same theory applies to participatory QI
approaches and individualized care
Results of a literature review:
Steps for successful partnerships
between researchers and knowledge users
1. Ensure early & on-going involvement of both partners
2. Plan for interaction & communication between
partners
3. Have processes in place
4. Develop a shared culture & language
5. Ensure partnerships are sustainable
S.L. Sibbald. A focused Literature Review on Integrated knowledge
translation partnerships (IKTP). CIHR commissioned report
Steps for successful partnerships:
Do they equally apply to patient-clinician
relationships?
1.
Ensure early & on-going involvement
– How to engage and involve patients who want to interact in this
way?
2.
Plan for interaction & communication
– Who wants to be involved, in what way, to what extent?
3.
Have processes in place
– What are the mechanisms for communication and providing input?
Are they targeted to the audience (web 2.0 or face to face)?
4.
Develop a shared culture & language
– Address power differences, explain terminology, share common
goals
5.
Ensure partnerships are sustainable
– Follow through with commitments, plans, suggestions
iKT and patient-centred
research and care
How do these steps:
 shape the research questions & decide on the
methodology
 help with data collection, tools development,
selection of outcome measures
 interpret the study findings and craft messaging
around them
 move the research results into practice
 widespread dissemination and application
...translate into patient centred
research/care?
iKT and Patients
Consider levels where patient/public
engagement with iKT may be possible
•
•
•
macro level: research and research funding priority
setting
meso level: study/project governance, research
question, study design, outcome measures; grant
review
micro level: participation in studies; use research
findings
How do these steps translate into
patient centred research/care?
In the UK, the James Lind Alliance has been supported by
the MRC and the Department of Health to foster
discussion among patients and clinicians about
variations in practice and the related unanswered
research questions about the effects of care.
The aim is to identify which uncertainties about the effects
of treatments are sufficiently important that they should
be addressed in systematic reviews of existing research
evidence or additional primary research.
shape the research questions &
methodology
As Iain Chalmers pointed out (Chalmers and Glaziou, 2009):
“An efficient system of research should address health
problems of importance to populations and the
interventions and outcomes considered important by
patients and clinicians.”
e.g. The research priorities of patients with osteoarthritis
of the knee favoured more rigorous evaluation of
physiotherapy and surgery and assessment of
educational coping strategies. 9% wanted more
research on drugs: 80% of RCTs on patients like this
are
drug evaluations
How do these steps translate into
patient centred research/care?
In the UK, the National Institute for Health Research
(NIHR) wants patients and the public to be involved in all
stages of research and has put structures in place to
achieve and facilitate this.
(Thornton, BMJ 2008;336;903-904)
The UK MRC encourages the involvement of consumers
and patient advocate groups in all stages of trial
development, with the aim of better trial design and
greater acceptability of both the trial and its findings
(http://www.mrc.ac.uk/consumption/groups/public/documents/conten
t/mrc001738.pdf)
How do these steps translate into
patient centred research/care?
The UK would appear to be ahead of the curve, but
Canada, the US, Australia and the Netherlands also
involve patients in various aspects of health care
decision making such as:
 Informing research priorities
 Involvement in health policy priority setting
 Participation in peer review
 Participation in public consultations
 Participation in advisory committees
 Shared decision making with clinicians around
treatment choices
 Participation in individual research studies as
co applicants or collaborators
shape the research questions &
methodology
Corner et al. (2007) consulted patients attending UK
cancer treatment centres about their cancer research
priorities.
Top priority areas included the impact cancer has on
life, how to live with cancer and related support
issues; risk factors and causes of cancer; early
detection and prevention.
While biological and treatment related aspects of
science were identified as important, patients rated
the management of practical, social and emotional
issues as a higher priority.
(Corner et al, Br J Cancer 2007 Mar 26;96(6):875-81.)
shape the research questions &
methodology
The study design must fit the question
If the focus is on understanding patients’ experiences,
then qualitative study designs are required
If establishing effectiveness is paramount, then
experimental study designs may be most appropriate
help with data collection,
tools development, selection of outcome
measures
Most rheumatoid arthritis patients, when asked,
indicated that fatigue was the dominant symptom of
concern – not pain, as researchers had assumed.
(Hewlett et al, 2005)
People with AIDS challenged researchers’ approaches
to conducting trial, which had overlooked patients’
preferred outcomes (Thornton, 2006)
Canada is developing a core set of validated patientreported cancer care outcomes. (Howell et al 2010)
interpret the study findings and
craft messaging around them
Given their experience with their condition,
patients/knowledge users may have insights about
the findings and can offer suggestions on how to
communicate the findings in linguistic and
culturally appropriate ways to make them more
accessible and understandable to patients
move the research results into
practice
For an iKT project, the first priority is to share the
findings with the study knowledge users (patients)
and the study participants (patients) so that they can
benefit from the application of the findings.
e.g. Malcolm Man-Son-Hing et al, provided the results
of the SPAFIII trial to study participants using a
patient decision aid to help them make post study
treatment decisions about whether to take aspirin or
warfarin for their atrial fibrillation.
A Patient Decision Aid Regarding Antithrombotic Therapy for
Stroke Prevention in Atrial Fibrillation: a Randomized Controlled
Trial. JAMA. 1999; 282(8):737-43
widespread dissemination and
application
25 Reviews:
Health
Literacy
Interventions
22 Reviews:
67 Reviews:
Clinical
Decision
Making
Interventions
Self Care &
Chronic Disease
Self Management
interventions
Health Literacy
Definition
A person who is
health literate is able
to access, understand,
evaluate and
communicate
information as a way
to promote, maintain
and improve health in
a variety of settings
across the life course
Expert Panel on Health Literacy. A Vision
for a Health Literate Canada: Report of the
Expert Panel on Health Literacy. Canadian
Public Health Association, 2008.
Interventions
• Written health
information materials
(e.g. brochures)
• Alternative format
resources (e.g. internet)
• Targeted approaches
for disadvantaged
groups with low health
literacy (e.g.
pictograms, videotape,
interactive computer)
Clinical Decision Making
Interventions
• Communication skills training for clinicians
• Question prompts for patients and coaching to
develop skills in preparing for a consultation,
deliberating about options, and implementing change
• Patient decision aids: explain options, present
probabilities benefits vs. harms, clarify features of
options that matter most, and provide structured
guidance in deliberation and communication
Self Care & Self
Management Interventions
• Aim to improve people’s practices in maintaining
and managing their disease
• Self management education to help people cope
with their disease and manage daily problems
• Self monitoring and self-administered treatment
• Self help groups and peer support
• Patient access to personal health information
• Patient-Centered tele-care
25 Reviews:
Health
Literacy
0
5
10
15
20
0
22 Reviews:
67 Reviews:
Clinical
Decision
Making
Self Care &
Chronic Disease
Self Management
5
10
15
20
0
20
40
60
Knowledge
Experience
UseHealthService
Behaviour and
Health Status
Positive
Positive
Mixed
Mixed
No
No Effect
Effect
Review Conclusions
• Patient education/ information  knowledge
• To  experience, service use, health outcomes,
behaviour change…
-  specificity/personalization of information
- combine interventions with professional or other social
support
- extend duration for long term behaviour change
• Research gaps: underlying frameworks, essential
elements & duration, cost-effectiveness, best
implementation strategies
widespread dissemination and
application
Patients/consumers can be
powerful dissemination
forces. Look at the amount
of press around liberation
therapy for MS
Session Objectives
• To improve understanding of what KT is
• To be able to distinguish between end
of project KT and integrated KT
• To appreciate the relationship between
KT and patients’ lives
Conclusions
1.
2.
3.
4.
Knowledge Translation is about getting evidence into
practice
KT is ultimately about improving the lives of patients
Integrated KT research is about meaningful
engagement of knowledge-users (patients) in
research/QI
Engagement can include involvement in:
-determining the research/QI question
-deciding on methods and facilitating data collection and
outcome measure selection
-interpreting findings and crafting messages
-dissemination and application
Conclusions cont’d
5.
6.
Patients are able to participate in the steps of an
iKT research if there is a plan for this AND they are
engaged by the researcher
Partnerships in KT, as in clinical practice, should be
premised on respect and on developing a process
to ensure that it happens and can be sustained
Knowledge,
if it does not determine action,
is dead to us.
Plotinus
(Roman philosopher 205AD-270AD)
The Last Word
Don Berwick
(Yale medical school graduation address 2010)
“All that matters is the person. The individual.
The patient. The poet. The Husband. The
Wife. In the moment. You must recover,
embrace and treasure the memory of your
shared, frail humanity – of the dignity in each
and every soul.”
For more information, visit our web page:
http://www.cihr-irsc.gc.ca/e/29418.html
http://www.cihr-irsc.gc.ca/f/29418.html
[email protected]
Thank you