Patient Centered Knowledge Translation:

1. Patient CenteredKnowledge Translation: Ian Graham, PhD FCAHS August 8, 2013 TEACH, NYC

2. Biases and Disclosures Training: medical sociologist, Postdoc- clin epi Methods: mixed methods- qual + quant Research interests: KT science, HSR Philosophy: social construction of knowledge; pragmatist

3. Biases and Disclosures • Relationships: • no industry funding or relationships • co-editor, KT in Health Care • Royalties go to fellowship fund • co-editor, Evaluating the Impact of Evidence-based Practice

4. Session Objectives To improve understanding of what is KT To be able to distinguish: between end of project KT, integrated KT and KT science To appreciate what patient centered KT looks like

5. Take Home Messages Knowledge Translation is about getting evidence into practice/policy and improving the lives of patients Integrated KT is about meaningful engagement of knowledge-users (including patients) in research Engagement can range from determining the research question to dissemination and application of findings

6. Take Home Messages Con’td 5. Partnerships in KT, as in clinical practice, should be premised on respect and developing a process to ensure that it happens and can be sustained Much of KT science is patient centered

7. What is Knowledge Translation? Knowledge translation practice 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 science (implementation science) is about: Studying the determinants of knowledge use and effective methods of promoting the uptake of knowledge

8. What is Knowledge Translation? KT is a dynamic and iterative process that includes synthesis, dissemination, exchange and ethically sound application of knowledge to improve health (patients lives), 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. http://www.cihr-irsc.gc.ca/e/39033.html

9. 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

10. 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

11. 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

12. 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

13. Three Aspects 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 • Research approaches that engage 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 (co-production of knowledge, Mode 2). Integrated KT research KT/implementation Science • The study of how to promote uptake of research in decision making

14. 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

15. Patient Centered 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)

16. What is integrated Knowledge Translation? • a way of thinking about conducting research to make the results applicable to the population under study… • a paradigm shift that focuses on engagement with the field and end-users in research (aligned with participative science and collaborative research).

17. What is integrated KT? Collaborative, participatory, action oriented, community based research, engaged scholarship, mode 2 knowledge production, co-production of knowledge End users can be: Policy- and decision-makers from the community to the federal level, the public and patients, industry, clinicians, health system managers, even whole communities Researchers from different pillars, disciplines, teams, countries

18. Knowledge users (patients) and researchers (knowledge creators) 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 What is (patient centered) integrated KT?

19. Why integrated KT approach? Through partnerships, the research is strengthened: • end-user engaged in developing the research question = solutions-based research that is relevant • end user engaged in the research process = confidence in the results and in the researchers • end-user (patients, health system decision makers, clinicians) engagement means readiness for the results and willingness to move those results into practice = impact (improved health care and outcomes)

20. Steps for successful partnerships: 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 S.L. Sibbald. A focused Literature Review on Integrated knowledge translation partnerships (IKTP). CIHR commissioned report

21. Patient centered iKT 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 KT, research, and care?

22. Patient Centered iKT 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

23. Research priority setting 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.

24. 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

25. shape the research questions & methodology 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)

26. 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)

27. 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

28. move the research results into practice 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

30. Patient Centered KT Science • Studying KT interventions directed at health care professionals to improve patient health outcomes (Cochrane EPOC group) • Studying KT interventions directed at patients to improve their health and other outcomes (Cochrane Consumers group) For example: • Health literacy interventions • Clinical decision making interventions • Self care and chronic disease management interventions

31. 22 Reviews: Clinical Decision Making 67 Reviews: Self Care & Chronic Disease Self Management 25 Reviews: Health Literacy Positive Mixed No Effect

32. Coulter review conclusions • Patient education/ information  patient knowledge • To  patient 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

33. Reflections on Session Objectives To improve understanding of what is KT To be able to distinguish: between end of project KT, integrated KT and KT science To appreciate what patient centered KT looks like

34. Take Home Messages Knowledge Translation is about getting evidence into practice/policy and improving the lives of patients Integrated KT is about meaningful engagement of knowledge-users (including patients) in research Engagement can range from determining the research question to dissemination and application of findings

35. Take Home Messages Con’td 5. Partnerships in KT, as in clinical practice, should be premised on respect and developing a process to ensure that it happens and can be sustained Much of KT science is patient centered

36. The Last WordDon 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.”