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 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. 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 (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….

Ethically sound application of knowledge 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. Knowledge synthesis Involves identifying the appropriate audience for the research findings, and tailoring the message and medium to the audience. Dissemination 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). Knowledge exchange 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 Ethically sound application of knowledge

Ethically sound application of knowledge 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. Knowledge synthesis Involves identifying the appropriate audience for the research findings, and tailoring the message and medium to the audience. Dissemination 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). Knowledge exchange 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 Ethically sound application of knowledge

Ethically sound application of knowledge 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. Knowledge synthesis Involves identifying the appropriate audience for the research findings, and tailoring the message and medium to the audience. Dissemination 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). Knowledge exchange 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 Ethically sound application of knowledge

Ethically sound application of knowledge 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. Knowledge synthesis Involves identifying the appropriate audience for the research findings, and tailoring the message and medium to the audience. Dissemination 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). Knowledge exchange 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 Ethically sound application of knowledge

At CIHR we consider two broad categories of KT The researcher develops and implements a plan for making knowledge users aware of the knowledge generated through a research project End of grant 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. Integrated KT

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

Lost in Knowledge Translation: Time for a Map? Monitor Knowledge Use Select, Tailor, Implement Interventions from: Graham et al: Lost in Knowledge Translation: Time for a Map? Products/ Tools Synthesis Knowledge Inquiry Tailoring Knowledge Evaluate Outcomes KNOWLEDGE CREATION Assess Barriers/ Supports to Knowledge Use Sustain Knowledge Use Adapt Knowledge to Local Context http://www.jcehp.com/vol26/2601graham2006.pdf Identify Problem Identify, Review, Select Knowledge

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 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 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 Ensure early & on-going involvement of both partners Plan for interaction & communication between partners Have processes in place Develop a shared culture & language Ensure partnerships are sustainable S.L. Sibbald. A focused Literature Review on Integrated knowledge translation partnerships (IKTP). CIHR commissioned report Table 5: Summary of Steps for Successful IKTP Ensure early & on-going involvement of both partners Allow both groups to have a say in developing research question; collection/analysis/interpretation of data should be discussed ahead of time Plan for interaction & communication between partners Formal and Informal (or structured and unstructured); planned out, at regular time intervals Have processes in place For the research process and also for other (communication, conflict) Develop a shared culture & language Acknowledge the ‘two communities’ and work to develop trust and understanding of both partners Ensure partnerships are sustainable Go beyond research project at hand; pay attention to ‘spin-off’ benefits (capacity building) 24

Steps for successful partnerships: Do they equally apply to patient-clinician relationships? Ensure early & on-going involvement How to engage and involve patients who want to interact in this way? Plan for interaction & communication Who wants to be involved, in what way, to what extent? 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)? Develop a shared culture & language Address power differences, explain terminology, share common goals Ensure partnerships are sustainable Follow through with commitments, plans, suggestions 25

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/content/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 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

widespread dissemination and application 22 Reviews: Clinical Decision Making Interventions 67 Reviews: Self Care & Chronic Disease Self Management interventions 25 Reviews: Health Literacy 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 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

25 Reviews: Health Literacy 22 Reviews: Clinical Decision Making 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

Conclusions 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. 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

if it does not determine action, is dead to us. 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.”

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 ian.graham@cihr-irsc.gc.ca Thank you