Patients’ Lives and Knowledge Translation Vice President, Knowledge Translation and Public Outreach Portfolio Canadian Institutes of Health Research Patients’

Patients’ Lives Patients’ Lives

andand Knowledge Translation Knowledge Translation

Ian D Graham

Vice President, Knowledge Translation and Public Outreach PortfolioVice President, Knowledge Translation and Public Outreach PortfolioCanadian Institutes of Health ResearchCanadian Institutes of Health Research

TEACH WorkshopTEACH WorkshopNYCNYC

August 11 2011August 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 Messages1. Knowledge Translation is about getting evidence into

practice

2. KT is ultimately about improving the lives of patients

3. Integrated KT research is about meaningful engagement of knowledge-users (patients) in research/QI

4. 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. Patients are able to participate in the steps of an iKT approach if researchers plan for this AND engage them

6. 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 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 a dynamic and iterative process that includes synthesis, dissemination, exchange and ethically sound application of knowledge to improve the

lives of patients….

KT is ultimately all about improving the patients’ lives

Knowledge synthesis

Ethically sound application of knowledge

Dissemination

Knowledge exchange

What is Knowledge Translation? 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.

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

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).

Involves identifying the appropriate audience for the research findings, and tailoring the message and medium to the audience.

Knowledge synthesis


Dissemination

Knowledge exchange





Knowledge synthesis


Dissemination

Knowledge exchange





Knowledge synthesis


Dissemination

Knowledge exchange





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 Diffusion (let it happen)(let it happen)

DisseminationDissemination (help it happen)(help it happen)

(activities that tailor the message and medium to a specific audience)

ApplicationApplication* (make it happen)(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 oneframework to guide the application or implementation

of knowledge

MonitorMonitorKnowledgeKnowledge

UseUse

SustainSustainKnowledgeKnowledge

UseUse

EvaluateEvaluateOutcomesOutcomes

AdaptAdaptKnowledgeKnowledge

to Local Contextto Local Context

Assess Barriers/Assess Barriers/Supports to Supports to

Knowledge UseKnowledge Use

Select, Tailor,Select, Tailor,ImplementImplement

InterventionsInterventions

Identify ProblemIdentify Problem

Identify, Review,Identify, Review,Select KnowledgeSelect Knowledge

Products/Products/ToolsTools

SynthesisSynthesis

Knowledge Knowledge InquiryInquiry

Tailo

ring

Kno

wle

dge

KNOWLEDGE CREATIONKNOWLEDGE CREATION

from: Graham et al: Lost in Knowledge Translation: Time for a Map?

http://www.jcehp.com/vol26/2601graham2006.pdf

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

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


In addition, knowledge users and researchers (knowledge creators) can work together to:

shape the research questionsdecide on the methodologyhelp with data collection, tools development,

selection of outcome measures interpret the study findings and craft messaging

around themmove the research results into practicewidespread dissemination and application


Why integrated KT?

The theoryThe 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 end-user 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 theoryThe 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

methodologyhelp with data collection, tools development,

selection of outcome measures interpret the study findings and craft messaging

around themmove the research results into practicewidespread 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


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/conte

nt/mrc001738.pdf)


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 settingParticipation in peer reviewParticipation in public consultations Participation in advisory committeesShared decision making with clinicians around

treatment choicesParticipation in individual research studies as co applicants or collaborators


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.)


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 patient-reported 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

25 Reviews: Health Literacy Interventions

22 Reviews: Clinical Decision Making Interventions

67 Reviews:Self Care & Chronic Disease Self Management interventions

widespread dissemination and application

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

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)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.

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

0 5 10 15 20

Knowledge

Experience

UseHealthService

Behaviour andHealth Status

0 5 10 15 20 0 20 40 60

Positive

Mixed

No Effect

25 Reviews:

Health Literacy

22 Reviews:

Clinical Decision Making

67 Reviews:

Self Care & Chronic Disease Self Management

Positive

Mixed

No 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

Conclusions1. Knowledge Translation is about getting evidence into

practice

2. KT is ultimately about improving the lives of patients

3. Integrated KT research is about meaningful engagement of knowledge-users (patients) in research/QI

4. 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. 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

6. 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.”

[email protected]

Thank you

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

Documents

Patients’ Lives and Knowledge Translation Vice President, Knowledge Translation and Public Outreach Portfolio Canadian Institutes of Health Research Patients’