Theme 1 Presentation. January 9, ACTION for Health. Document Status:

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In association with Simon Fraser University & the Vancouver Coastal Health Research Institute NOT FOR CIRCULATION FOR INTERNAL CIRCULATION FOR PUBLIC CIRCULATION X Theme 1 Presentation January 9, 2006 ACTION for Health Document Status: Published Paper Working Paper Report Draft Presentation Practitioner s Pointers Briefing Note Research Tool Overview Other Prepared by: Roma Harris Irving Rootman Judith Krajnak PhD PhD Post Doctoral Fellow University of Western Ontario University of Victoria University of British Columbia Document Contact: Ellen Balka School of Communication Simon Fraser University 8888 University Drive Burnaby, BC, Canada V5A 1S6 tel: +1.604.725.2756 email: ellenb@sfu.ca website: www.sfu.ca/act4hlth/ SFU Institutional Repository: http://ir.lib.sfu.ca/handle/1892/3701

January 9, 2006 Theme 1 Presentation Roma Harris, The University of Western Ontario Irv Rootman, University of Victoria

Presentation Agenda Organization of Theme 1 Teams & Individual Projects Research Focus & Questions Conceptual Framework Research Methods Collaborations with Community Partners Student Training Progress to Date Research Findings Dissemination Activities to Date & Proposed Dissemination

Organization of Theme 1 Teams Theme 1 Co-Leads Irv Rootman & Roma Harris Thematic Coordinators Jana Fear & Judith Krajnak UK/Netherlands British Columbia E. Balka I. Rootman Ontario R. Harris N. Wathen Newfoundland L. Bella E. Green F. Griffiths F. Henwood S. Wyatt Australia L. Simpson

Organization Of Individual Projects Vancouver, British Columbia Vancouver Public Library (E. Balka) BC Cancer Agency (E. Balka) Content Analysis of Health Information Web Sites (I. Rootman, J. Krajnak, E. Balka) BC HealthGuide (I. Rootman, J. Krajnak) Observations at Mid-Main Community Clinic (E. Balka) Farsi-Speaking Immigrants & Use of Government-Sponsored Health Information Program (I. Rootman, I. Poureslami, E. Balka) West Kootenay & Boundary Region, British Columbia Rural HIV/AIDS Information Networks Study (I. Rootman, J. Krajnak)

Organization Of Individual Projects (cont d) Huron and Perth Counties, Ontario Rural Women s Health Information Seeking (R. Harris, N. Wathen) Huron County Telephone Survey (R. Harris, N. Wathen, J. Fear) Rural HIV/AIDS Information Networks Study (R. Harris, T. Veinot) Collaboration with Huron County Library/Health Unit (R. Harris) London, Ontario Critical Perspectives on Empowerment in Health Care (R. Harris, T. Veinot, N. Wathen) Comparison of Consumer Health Information Web Sites (R. Harris, N. Wathen, J. Fear)

Organization Of Individual Projects (cont d) Newfoundland Capacity Development and the Urban CAP Programme at Macmorran Community Centre (L. Bella) Web Based Initiatives of Small Community Based Health Organizations (L. Bella) Rural HIV/AIDS Information Networks Study (L. Bella) Northeastern Australia Partnering with Natural Helpers to Deliver Health Information in Rural, Regional and Remote Australia (L. Simpson)

Organization Of Individual Projects (cont d) Brighton, United Kingdom Health Information Seeking in Public Libraries: The Role of Intermediaries (F. Henwood, R. Harris) Brighton/Warwick/Teesside, United Kingdom Attitudes of Health Care Practitioners to the Internet: Own and Patient Use (F. Henwood, S. Wyatt, F. Griffiths, E. Green, R. Harris) *crosses with theme 2

Theme 1 Research Focus Theme 1 research focuses on lay user issues, including: Information literacy Information intermediaries Navigation Information use

Theme 1 Research Questions What is the role of information technology in laypersons search for and use of health information? How does the information they locate through means such as the Internet affect their lives and their health outcomes or those of their family members? (e.g., Huron County telephone survey; Rural HIV/AIDS; Rural Women; Natural Helpers) What is the role of intermediaries in the search for and use of health information by laypersons? (BC HealthGuide; Rural HIV/AIDS; Brighton Public Library; Macmorran; Natural Helpers) How does the use of information technology to locate health information affect the distribution of responsibilities among end users, information intermediaries and health care providers? How is any potential re-distribution of responsibilities perceived by the various actors (system, provider, layperson)? Do potential re-distributions impact access to, or provision of, care? (Huron County telephone survey; BC HealthGuide; Rural HIV/AIDS; HCPs & Internet; Macmorran)

Theme 1 Research Questions (cont d) What is the link between individuals capacity for seeking and using health information, their interactions with health care systems, and their health outcomes? What is the link between a community s capacity to locate and use health information, community members interactions with health care systems, and their health outcomes? (Rural HIV/AIDS; BC HealthGuide; Macmorran) What are the facilitators and barriers to the retrieval and use of health information at different levels (i.e., individual, community, societal)? (Huron County Library; Brighton Public Library) How does access to and use of information technology affect an individual s ability to interpret and make decisions based on complex health information? How does the complexity of health information located through the use of the Internet affect patterns of use and individual health care outcomes? (Rural HIV/AIDS)

Conceptual Framework Individual projects are constructed within their own individual disciplinary frameworks These include: Science and Technology Studies, Health Promotion, Health Communication, Library and Information Science, Social Work, and Business Meetings bring together this multi-disciplinary group and new frameworks/understandings emerge through discussions & review of works-inprogress The sum is greater than the parts

Research Methods Theme 1 projects use a wide variety of methods, including: In-depth, qualitative interviews Focus groups Telephone interviews Self-administered surveys Web surveys Observations Content analysis Social network analysis

Collaborations with Community Partners All theme 1 projects involve community partners in some way These relationships are managed by the investigators responsible for the individual projects, often through the creation of advisory groups For example: On the HIV/AIDS project, each site has an advisory group comprising various community service providers and PHAs with whom the investigators consult on a regular basis The Brighton Public Library project is a collaborative effort with the management team of the local public library service

Student Training Immersed in work with individual projects Opportunities to interact with community partners as well as with academic investigators outside their home discipline Participate in conferences and data-gathering experiences in a variety of sites both in Canada and abroad Examples: Ottawa, Quebec City, Brazil, and the UK Some asked to present their research findings at Theme 1 meetings Invited to attend ACTION for Health full team meetings and participate in exchange of ideas

Progress To Date Established theme-specific research questions Have created several research instruments/tools related to navigating health information that are shared among team members Have begun to write vignettes based on ethical/legal issues emerging from research *crosses over into Theme 3 work Developed a tool to evaluate health information web sites that is currently being used by community partners in St John s (and possibly by Canadian Health Network Rural Health Committee) Successfully obtained CIHR grant to expand the HIV/AIDS project Held a workshop on Science & Technology Studies Planning upcoming workshop on Library & Information Science

Research Findings Some projects successfully enhanced community capacity building around issues related to knowledge and skills of individuals/groups about health information & health support systems (Rural HIV/AIDS; Macmorran) Individuals encounter barriers in using IT-based systems to locate, use and interact with health-related information (MidMain; Vancouver Public Library; Huron County telephone survey) Key informants, such as natural helpers, embedded in various social networks mediate transmission of health information (Rural HIV/AIDS; BC HealthGuide; Macmorran; Natural Helpers) Low general awareness for government-sponsored health information web sites at both the federal & provincial levels (Huron County telephone survey; BC HealthGuide) Health information web sites tend to be written at very high levels of readability (Content analysis of HI web sites)

Dissemination Activities To Date Conference presentations include: Health Literacy Conference (October 2004, Ottawa, ON) 2005 Congress of the Humanities (June 2005, London, ON) (panel presentation) Canadian Public Health Association (September 2005, Ottawa, ON) (presentation & poster) Society for the Social Studies of Science (October 2005, Pasadena, CA) (panel presentation) Rural Health Society Conference (October 2005, Quebec City, QC) Community presentations include: BC Ministry of Health (Victoria, BC) (rounds presentation) Vancouver Public Library Staff (BC) Wellington, Waterloo, Dufferin Health Library Network (ON)

Proposed Dissemination Activities Academic venues: Call for proposals for Gender on the Line book Special edition of Information, Communication and Society journal Canadian Public Health Association (May 2006, Vancouver, BC) Canadian Association for Information Science (June 2006, Toronto, ON) Information Seeking in Context (July 2006, Sydney, Australia) AIDS 2006 (August 2006, Toronto, ON) Society for the Social Studies of Science (November 2006, Vancouver, BC) Chronic Disease Prevention Alliance of Canada (November 2006, Ottawa, ON) World Conference on Health Promotion and Education (June 2007, Vancouver, BC)

Proposed Dissemination Activities Non-Academic venues: Ongoing interaction with partners Health 101 class for general public Presentations geared for general public held in such sites as Vancouver Public Library Rounds presentation at the BC Ministry of Health