Patients’ Lives and Knowledge Translation

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 12 2010

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 all about improving the patients’ lives

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 lives of patients‌.

What is Knowledge Translation?

Knowledge synthesis

 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.

Dissemination

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

Knowledge exchange

 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).

Ethically sound application of knowledge

 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

The researcher develops and implements a plan for making knowledge users aware of the knowledge generated through a research project

Integrated KT

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* 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

The knowledge to action cycle is one framework to guide the application or implementation of knowledge

Monitor Knowledge Use

ow led

Knowledge Inquiry

Synthesis

Adapt Knowledge to Local Context

Evaluate Outcomes

ge

KNOWLEDGE CREATION

Kn

Assess Barriers/ Supports to Knowledge Use

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

Ta ilor ing

Select, Tailor, Implement Interventions

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: 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

Why integrated KT? The theory: 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

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 * A focused literature review on integrated knowledge translation partnerships. Shannon Sibbald, 2009. Unpublished (as yet) report commissioned by the CIHR KT Portfolio

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, how, how much?

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 – How to best address power differences, explain terminology, share common goals?

5.

Ensure partnerships are sustainable – How to be sure to 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?

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

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) In the UK, researchers seeking funding for RCTs must demonstrate that patients have been given an opportunity to provide input on the outcomes to be measured in the trial http://www.nihr.ac.uk/awareness/Pages/default.aspx

Canada is developing a core set of validated patientreported cancer care outcomes (Howell et al 2010)

The handbook to the NHS Constitution published in January 2009 confirms that the NHS will do all it can to ensure that patients, from every part of England, are made aware of research that is of particular relevance to them. Read more We have put structures in place that will help people take part in all the stages of NHS research. Examples are: the successful National Cancer Research Network where patients are included in plans for all the research carried out the funding of INVOLVE which promotes active public participation in NHS, public health and social care research to improve the way that research is prioritised, commissioned, undertaken, communicated and used.

Together with our partners we will provide information about health research and development in a way that can be understood by patients and the public and will encourage people to help us understand the issues that are vitally important to health research.

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 to this community

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 for the application of the findings. e.g. development of a decision aid explaining the results of a clinical trial comparing the effects of warfarin versus aspirin for patients with atrial fibrillation, affected the decision-making process of study participants. “For patients with atrial fibrillation who had participated in a major clinical trial, the use of a decision aid improved their understanding of the benefits and risks associated with different treatment options and helped them make definitive choices about which therapy to take.“ (Man-Son-Hing et al, JAMA 1999)

widespread dissemination and application Effective KT interventions focused on patients: Patient oriented interventions can actively engage patients to improve their knowledge, experience, service use, health behaviour and health status Decision aids that explain options, clarify values and provide structured guidance or coaching in deliberation and communication, can be used by patients and in consultation with their physician to make treatment decisions.

Evidence suggests that use of a DA improves patients’ participation, increases knowledge of their Tx options and outcome probabilities and improves agreement between patients’ values and subsequent Tx decisions (O’Connor, 2009

widespread dissemination and application Self-care interventions are effective approaches to improve patients’ practices in maintaining health and managing disease (O’Connor 2009) e.g.  self-management education  self-monitoring and self-administered treatment  self-help groups and peer support  patient access to personal medical information  patient-centred tele-care An informed and involved patient can understand their health trajectory and how their treatment regime can impact it

widespread dissemination and application

Patients/consumers can be powerful dissemination forces. Look at the amount of press around liberation therapy for MS

Conclusions 1. KT is ultimately about improving the lives of patients 2. iKT is about meaningful engagement of knowledge-users in research 3. patients/public are knowledge-users of health research

Conclusions 4. patients are able to participate in the steps of an iKT approach if researchers planned for this and engaged them 5. partnerships in KT as in clinical practice should be premised on respect and developing process to ensure that it happens and can be sustained

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

ian.graham@cihr-irsc.gc.ca

Thank you