Table of Contents

• Executive Summary
• Word from the Scientific Director
• Overview of Regional Seniors' Workshops on Research
  • Background
    • Table 1. The Regional Seniors' Workshops on Research
  • Regional Implementation Committees
  • Participants
  • Objectives of the Regional Seniors' Workshops on Research
  • Key Workshop Themes
  • Research Presentations
  • Seniors' Participation in Research
  • Breakout Sessions
    • Breakout Session #1: Perspectives on Priorities for Research on Health and Aging
    • Breakout Session #2a: Developing an Ongoing Engagement Strategy (Prairies, Atlantic, B.C./North)
    • Breakout Session #2b: Specifying the Priorities (Ontario, Quebec)
• Priorities in Research on Health and Aging
  • Introduction
  • Priority Topics
    • Health Care and Health Services
      • Training Health Care Providers and Standards of Care
      • Access to Health Services
      • Medications
    • Housing-Care Continuum
    • Health Promotion and the Determinants of Health
    • Isolation
    • Mental Health
    • Ageism and Public Profile
    • Caregiving
    • Culture and Cultural Differences
    • Transportation and Mobility
    • Knowledge Translation
    • Miscellaneous Topics
  • Suggestions for Ongoing Engagement
    • Suggested Structures
    • Recommended Processes
  • Summary and the Way Forward
  • Appendices
    • Appendix A: Regional Seniors' Workshops - Research Presentations
      • Prairie
      • Atlantic
      • British Columbia and Northern Canada
      • Ontario
      • Quebec
    • Appendix B: Summary Table of Research on Aging Priorities

Executive Summary

The Institute of Aging (CIHR-IA) of the Canadian Institutes of Health Research (CIHR) hosted five Regional Seniors' Workshops on Research (RSWR) across the country between June 2004 and April 2006.

The objective of the workshops was to formally initiate discussion and networking on the topic of health research on aging among seniors, seniors' organizations, service providers and CIHR-IA.

The goals for the workshop series were:

• to increase participants' awareness about CIHR, CIHR-IA and regional activities related to research on aging;
• to gather input on health issues that are priorities for research on aging in different Canadian regions;
• to increase participants' understanding of the perspectives and expertise of different sectors;
• to increase participants' understanding of the research process and its bene?t to their lives;
• to increase participants' understanding of established ethical procedures to protect individuals involved in research; and
• to increase participants' commitment to research on aging through participation in and support of research on aging.

The RSWR included presentations on the research process, on seniors' involvement in research, and on the various research initiatives relevant to health and aging across Canada.

The leading health issues identified as priorities for research on aging by participants across the country were: health care and health services, the transition from independent living to living with assistance or care (called the housing-care continuum), and health promotion.

To continue this process of public engagement and involve Canada's seniors in the health research enterprise, participants recommended that CIHR-IA work through existing seniors' networks and infrastructures to communicate, using many media formats to disseminate research information that is salient to seniors. Hosting smaller, more local meetings with similar objectives was proposed, as was training seniors to serve as knowledge brokers and offering community grants to seed research development.

Overall, the RSWR realized their objectives. These two-day exchanges shed new light on regional health research activities and priorities, initiated discussion on processes for sharing research information and offered participants unique opportunities for networking and dialogue.

CIHR-IA is committed both to continuing the exchange of knowledge with its senior constituents and to ensuring that their priorities for research are carefully considered. The next steps will include designing a strategy for ongoing engagement with older Canadians and those who work and advocate on their behalf. The Institute will also seek the guidance of experts in each of the priority research themes to assess whether the need is for more research that is targeted to these themes or for the appropriate transfer and use of existing research results. Under the guidance of its Advisory Board, the Institute will then develop strategies that best fit these needs.

Word from the Scientific Director

In May 2003, the Institute of Aging (CIHR-IA), one of the 13 Institutes of the Canadian Institutes of Health Research (CIHR), held a National Seniors' Forum for Research in Ottawa. The forum was designed to inform Canada's seniors about the Institute and its strategic directions, provide information on ways in which older people can be involved in research and, most importantly, to engage Forum participants in discussions of recent trends in research on aging and the identification of gaps in research.

One of the principal outcomes of the National Forum was a recommendation that regional workshops be held across Canada to engage a broader community of seniors and governmental and voluntary organizations in these discussions. To this end, CIHR-IA hosted five regional workshops, covering the Atlantic, Quebec, Ontario, Prairies and British Columbia and the North. These two-day events brought together seniors, members of seniors' organizations, advocates, practitioners, non-governmental organizations (NGOs), policy makers and researchers who work on seniors' issues.

The fundamental goal of CIHR-IA is the advancement of knowledge in the field of aging to improve the quality of life and the health of older Canadians.

This summary report highlights issues identified as priorities for health research by older Canadians and those who work on their behalf. These will help inform the development of the Institute's research priorities and strategies in the years to come.

As part of our commitment to keeping older Canadians and other stakeholders engaged in the research endeavour, CIHR-IA will also use the recommendations found in this Report to guide ongoing consultations and public engagement.

On behalf of the National Organizing Committee, the five Regional Implementation Committees and CIHR-IA, I am pleased to present the Summary Report of the Regional Seniors' Workshops on Research. I sincerely thank the many committee members, Institute of Aging staff, volunteers and workshop participants for their contributions to this important undertaking. Our work together has just begun.

Anne Martin-Matthews
Scientific Director,
Institute of Aging

Overview of Regional Seniors' Workshops on Research

Background

The Institute of Aging of the Canadian Institutes of Health Research (CIHR-IA) held a National Seniors' Forum on Research in May 2003 to discuss national research priorities on aging and health with seniors and representatives of seniors' organizations across Canada. At the conclusion of the meeting, there was agreement on the need to hold similar regional workshops across the country. Hence, CIHR-IA hosted a series of Regional Seniors' Workshops on Research (RSWR) across Canada. The goal of these workshops was to hear seniors' views with respect to needs and priorities for research on aging in Canada. The IA also wanted to connect with Canada's senior population, along with the organizations and service providers who work with or on behalf of older adults; to introduce these individuals and groups to each other; and to identify ways to stay connected beyond these Workshops. Regional workshops were designed to be active, interactive and relevant to older adults and those who work with them.

Regional Implementation Committees

For each workshop a Regional Implementation Committee was formed to advise CIHR-IA on appropriate venues and dates, recommend speakers and nominate and select participants. The Chair of this committee also chaired the workshop. Names of Regional Implementation Committee members can be found in the proceedings noted in Table 1.

Participants

The number of participants at each regional workshop was typically limited to 50. Participants for each workshop were nominated by the Regional Implementation Committee, as key members of the region's senior population, along with leading representatives from seniors' organizations and health, social and community services providers. Costs for travel, meals and accommodations of all participants were paid by the CIHR-IA.

Over the course of the first three workshops, it became evident that including other sectors would enrich the learning and networking opportunities offered by these events. For the final two workshops (Ontario and Quebec), other sectors were invited to participate, including practitioners, volunteer organizations, policy makers and researchers.

Every attempt was made to ensure that:

• significant ethnic and cultural groups in the respective region were represented;
• a wide range of older adult ages was included; and
• older adults made up at least 70% of the workshop participants.

Participants were offered funds for relief caregiving and travel costs for caregivers where needed.

In total, approximately 200 older Canadians representing 5 broad regions of the country participated in this program.

Objectives of the Regional Seniors' Workshops on Research

The regional workshops strove to offer participants opportunities:

• to identify priorities for health research on aging;
• to become familiar with research projects on aging in their region;
• to find out why taking part in research projects is important;
• to be informed of their rights as participants in research and researchers' responsibilities; and
• to help plan for a strategy to connect the Institute of Aging with seniors, seniors' organizations and service providers.

An additional objective was added for the Ontario and Quebec workshops: To increase participants' understanding of the perspectives and expertise of different sectors.

Key Workshop Themes

All workshops were designed to feature the following themes through presentations, discussions and/or displays:

• turning research results into services, products or policies;
• privacy and informed consent in research;
• the roles of seniors in research;
• research and ethics;
• The Canadian Longitudinal Study on Aging.

Research Presentations

Each workshop opened with a welcome and overview of the CIHR and CIHR-IA by Dr. Anne Martin-Matthews, Scientific Director of CIHR-IA. A presentation on the Canadian Longitudinal Study on Aging by one of its Principal Investigators was also a standard feature of each workshop. Other presentations aimed to expose participants to cutting-edge research on aging being conducted by investigators in their region. A full list of the research presentations can be found in Appendix A.

Seniors' Participation in Research

As part of the Prairie, Atlantic and B.C./North workshops, seniors who had been involved in research in some capacity (as an assistant, a research subject, a researcher or as a member of an ethics review panel) participated in a panel presentation describing their experiences and offering advice to participants interested in engaging in research. For the Ontario workshop, seniors who had been involved in research were invited to mount a display and discuss their experiences with participants over the networking breaks and meal periods. In Quebec, a session was devised whereby all senior participants were asked to describe their involvement in research to a cross-sectoral breakout group. The group then reported its various research roles, experiences and issues to the plenary

Breakout Sessions

Breakout Session #1: Perspectives on Priorities for Research on Health and Aging

The purpose of this session was to provide a forum for identification and discussion by either geographic region (Prairies, Atlantic, and B.C./North) or, in Ontario and Quebec, sector (seniors, volunteer organizations, service providers, policy makers and researchers) of health issues that should be priorities for research on aging. Delegates were divided into groups by different sub-region or sector (seniors, non-governmental organizations, practitioners, policy makers and researchers) to discuss and rank health issues related to research on aging. Each group reported on its top three to five priority items for research to the full plenary session for discussion. Workshop delegates were then asked to identify the themes that were common across the sectors.

Breakout Session #2a: Developing an Ongoing Engagement Strategy (Prairies, Atlantic, B.C./North)

The purpose of this session was to get input from participants about essential elements and best practices for ongoing interactive engagement and consultation processes between CIHR-IA and seniors, seniors' organizations and service providers.

Breakout Session #2b: Specifying the Priorities (Ontario, Quebec)

This session was designed to further examine issues agreed to be common priorities across different sectors following the first Breakout Session. The desired outcomes were key research questions related to the priority that could be used to guide the CIHR-IA in its future selection of priorities.

Priorities in Research on Health and Aging

Introduction

This section reports the synthesis of the health research priorities identified by regional breakout groups at the Prairies, Atlantic and B.C./North workshops and by the sector breakout groups at the Ontario and Quebec workshops. Where relevant, the nature or geographical context of the group reporting the research issue are noted.

In many instances, breakout groups reported on priority health issues that were not specifically articulated as research priorities or questions. For the purposes of this report, such priority issues are interpreted as themes to which more attention needs to be paid, whether it is in knowledge creation (research), its translation (research transfer), its uptake (research to action) or all three.

Not surprisingly, health issues receiving media attention around the time of the workshop (such as the 'right to die' issue in B.C./North) and dynamic research presentations by the invited speakers influenced topics identified by breakout groups. This did not bias the overall profile of priority issues, as the workshops were held over a two-year span and featured different research presentations throughout.

Most of the priorities could be grouped into larger themes as outlined in Appendix B.

However, some issues crossed more than one theme. For example, 'access to health services', was linked to both 'isolation' and 'transportation' as distinct concerns for participants from rural and remote regions.

A visual synopsis outlining the relative rankings of each theme across the five workshops can be found in Appendix B.

Finally, it must be recognized that the priorities identified by the senior participants reflect those of Canada's well elderly, those who are engaged socially and able to attend a workshop, and those able to communicate in one of Canada's official languages.

Priority Topics

Health Care and Health Services

"Research should examine how to change the orientation of health professionals from drivers to partners in health care. Seniors want a partnership that allows them to explore available options and what works for them."  British Columbia/North

As a collective, the overall theme of health care and health services was identified most often, particularly by older participants, and with relative consistency across the five regions.

Health care and health services issues were those associated with the formal acute care system, health practitioners, acute care services and medications. This area was broken into three main sub-themes:

• Training and standards of care
• Access
• Medications

Training Health Care Providers and Standards of Care

Both senior and non-senior groups identified the need to shift the health care system so that it manages health and illness of older adults appropriately. This would involve research to help identify:

• appropriate geriatric/gerontology training for health care practitioners and others who serve seniors;
• best practices in both the organization and continuity of complex health care requirements of older adults; and
• effective methods for engaging older adults in their health management (including promoting health rather than reacting to individual illnesses).

Access to Health Services

Participants were concerned with reduced or restricted access to health services, largely related to cutbacks in government coverage for physiotherapy and other specialty services, and waiting lists for acute care treatment. Seniors from remote regions such as the Territories, northern parts of British Columbia and Ontario and rural areas of the Maritimes and Newfoundland and Labrador identified concerns regarding the lack of general and specialized health services, transportation needs associated with accessing health services and the need for alternate service programs, such as mobile health teams, physician exchange programs, and nurse practitioners. Proposed research centred on measuring the impact of restricted access and cost-benefit analysis of new access models.

Medications

Safety, over-prescription and side effects of medications were key concerns within this theme, as were the empowerment of older adults to 'ask the right questions' and manage their own medications. Other concerns included the costs of medications, use of alternatives to pharmaceuticals and increased involvement of pharmacists. Topics within this sub-theme were identified only by seniors.

There was notable overlap between health care and health services priorities and some of those in the housing-care theme (see below).

Housing-Care Continuum

"I didn't want to share a room in university residence so what makes you think I want to share one now in a nursing home?" Atlantic Region

Where groups specifically identified informal or out-of-hospital care such as assisted living and aging-in-place, home care, nursing homes or long term care, these priorities were included in the housing-care continuum category. Priorities associated with home ownership and independent living were also included here

This theme was uniformly given a high priority by seniors across all regions.

It is important to recognize that participants made strong connections between the location, aesthetics, affordability and safety of place of residence and health outcomes. Senior participants across the country acknowledged the lack of understanding or information of the best housing options for older adults, a number of whom will transition from living independently to some level of care in later life. Research priorities focused on the need to know:

• What are the best residential and care options as one ages?
• Is 'aging in place' appropriate for all?
• Can cultural differences be accommodated?
• What are the cost-benefits to both seniors and society of these options?
• How will seniors access the best option?
• What models of policy, finance and support have been successful?

Health Promotion and the Determinants of Health

"We look at illness before we look at why people are healthy. But shouldn't we find out why some people age well? " "Ontario

The influence on health of social factors such as culture and ethnicity, mutual support, lifelong learning and intergenerational activities were identified (largely by seniors) as areas for investigation. Participants indicated that, while lifestyle research was warranted, translation of knowledge to healthy aging programming and 'best practices' was an important priority.

Isolation

"All seniors feel isolated, even those who do not admit it." Quebec

Both social and geographic isolation of older Canadians were reported, largely by seniors, as health issues that demanded research attention. Participants from all regions of Canada, in particular seniors representing the North, the Prairies, and the Atlantic regions, identified the impact of isolation on the health of older adults. Strong links to mental health, access to health services, and the housing-care continuum were seen within this theme. Noted areas for investigation included: identification of the links between isolation and health; exploring solutions (such as technology) to health risks associated with isolation; and identifying determinants of social engagement by isolated older adults

Mental Health

"While 90% of the population handles aging well, research into the impacts of aging will eventually benefit all." Prairies

Health research issues associated with mental health ranged from promotion of psychological health to treatment. Linked themes were isolation, medications, health promotion and determinants of health, and access to services. Suggested research included investigation of the role of factors such as stress, isolation, sexual orientation, spirituality, physical and cognitive impairment, overmedication, abuse, addiction and poverty on mental health of older adults. Depression was a significant topic within this theme.

Ageism and Public Profile

"We need a better understanding of the effects of age discrimination on seniors' health." Quebec

Both senior and non-senior participants, in particular those in Quebec and the Maritimes, identified ageism, age discrimination, the negative portrayal of older adults, and seniors' self-image as key health issues requiring investigation. There was also a call to boost social solidarity through enhancing the public profile of older Canadians; reducing the disproportionate emphasis on illness and disability in portrayals of aging; and featuring seniors' social and economic contributions to society. As a theme for research, one group of Quebec seniors proposed, "We must identify and use as a basis for reflection, societal values regarding seniors; including not only existing and emerging values, but also those that are disappearing". Linked to this theme was a proposal from Prince Edward Island seniors for research designed to identify best practices or models for influencing government policy and decision making, for the purpose of getting seniors' issues onto the political agenda and enhancing the public profile of these issues.

Caregiving

"Advocacy without research does not work."  Prairies

Many aspects associated with support for caregivers were identified as priorities for research. These included training, financial support, emotional and coping support and respite services. A Newfoundland and Labrador group noted that research results in this area needed to be translated into appropriate policies.

Culture and Cultural Differences

" How do we make the health care system accessible to seniors from different cultural heritages or who speak different languages?" Ontario

Culture was identified not only as a determinant of health, but also as a challenge for receipt of appropriate health services and a source of health disparity (as in the cases of some Aboriginal peoples, immigrants and refugees). Priority areas of inquiry included examining why health advantages and disadvantages in old age exist across cultures and identification of the barriers to health and health services associated with cultural and ethnic differences.

Transportation and Mobility

"Access to health care is a big topic for seniors living in small and rural communities. Transportation is just one part of it." British Columbia/North

Mobility was identified by three Quebec groups as an issue linked with autonomy and quality of life. The role of housing design and transportation services were identified as important in this context. Manitoba seniors cited the importance of driving and drivers in offsetting the isolating effects of winter. Transportation was also linked with access to health services, particularly in rural regions.

Knowledge Translation

"Evaluate the research that's already been done and get the information to policy makers." British Columbia/North

At three of the five workshops, seniors suggested that a considerable amount of health research relevant to older adults had already been carried out, and the resulting information needed to get to those who could and should use it. This was also a point made by nongovernmental organizations in both Ontario and Quebec, as well as policy makers in Ontario. Policy makers were most often mentioned as the proposed recipients of research knowledge; however, seniors themselves indicated they should also be targets for communications about the results of research, as they too should learn what is best for their health.

Miscellaneous Topics

"Some people are born old, some people never get old." Atlantic Region

A number of other research priorities were identified by fewer groups across the workshop series. These were:

• Poverty and financial security
• Elder abuse
• Biological mechanisms of aging
• Aging with developmental disabilities
• Musculoskeletal diseases
• End of life - the right to die with dignity, palliative care, advocacy and related issues

Suggestions for Ongoing Engagement

The advice received through the second breakout sessions at the Prairie, Atlantic, and B.C./North workshops was similar across the three events with regard to preferred mechanisms for continuing the information exchange among CIHR-IA and workshop participants:

Suggested Structures

• Create a Research on Aging Committee under the Federal Division of Aging and Seniors to rally and link seniors and their regional organizations.
• Build on existing networks of seniors within regions; appoint regional representatives.
• Train seniors to serve as volunteer knowledge brokers.
• Engage Institute Advisory Board members as regional liaisons/advocates/ambassadors.
• Offer grants for communities to develop and conduct applied research projects relevant to older adults.

Recommended Processes

• Continue with face-to-face meetings, ideally in smaller regional centres
• Capitalize on other opportunities for face-to-face meetings.
• Convene follow-up workshops to report on plans and accomplishments.
• Bring together regional health authorities, agencies and researchers on a regular basis.
• Use various media to communicate effectively with seniors (newsletters, internet, local newspapers, senior-specific publications, etc).
• Ensure all communications are accessible, expressed in plain language and regionally relevant.

Summary and the Way Forward

CIHR-IA's two-year cross-country workshop series offered older adults in each region an opportunity to hear about research being conducted with the goal of improving the health and quality of life of older Canadians. In addition, participants shared their experiences in the research process and identified priorities for health research. These consultations brought forward health issues of concern to seniors, those who provide programs and services for older adults and those responsible for policies affecting this population. The research priorities most frequently identified reflected three broad themes: health care, the housing-care continuum and health promotion. These, and the more minor themes, have also arisen in other national consultations.

As an example, evidence from the Interim Report of Special Senate Committee on Aging1 described the inconsistencies and challenges of residential care for seniors, the lack of clinical specialists in geriatrics and gerontology, and the need for policies embracing health promotion, as key issues facing Canada's elderly and aging populations. Similarly, a number of the priority themes emerging from the national consultation on health services and policy issues, Listening for Direction II2, were allied with those brought forward in our Seniors' Research Workshops, notably: health services workforce planning, training and regulation; timely access to quality care for all; and linking care across place, time and settings. The United Nations Second World Assembly on Ageing3 also pointed to many of these issues as priorities for action on an international scale.

The success of the Regional Seniors' Workshops on Research in bringing older Canadians into the discourse on health research in aging was evident in their desire to maintain this new connection with CIHR-IA.

CIHR-IA is committed to both continuing the exchange of knowledge with its senior constituents and ensuring the guidance offered through these Workshops will inform the development of the Institute's research priorities and strategies in the years to come.

Appendices

Annex A: Regional Seniors' Workshops - Research Presentations

Prairie

1. Making Pain Less Painful: From Conception to Results - Dr. Thomas Hadjistavropoulos, Centre on Aging and Health, University of Regina.
2. Regional Programs and Initiatives
   1. Elder Friendly Communities Program - Dr. Carol Austin, Professor Faculty of Social Work, University of Calgary
   2. Rural Dementia Care - Dr. Debra Morgan, Institute of Agricultural Rural and Environmental Health, University of Saskatchewan
   3. The Aging in Manitoba Longitudinal Study - Dr. Betty Havens, Department of Community Health Sciences, University of Manitoba
3. Ethical Issues Around the Use of Older Participants in Research: From Codes to Conduct - Dr. Paddi O'Hara, Ethics consultant.
4. From Research to Products - Dr. Geoff Fernie, Vice President of Research, Toronto Rehabilitation Institute

Atlantic

1. Research Issues, Themes, and Projects in the Atlantic Region - Dr. Janice Keefe, Canada Research Chair in Aging and Caregiving Policy, Mount Saint Vincent University
2. From Concept to Results: The Nova Scotia Oral Health of Seniors Project - Dr. Mary McNally, Faculty of Dentistry at Dalhousie University
3. From Problem to Product - Dr. Geoff Fernie, Vice President of Research, Toronto Rehabilitation Institute

British Columbia and Northern Canada

1. Canadian Driving Research Initiative for Vehicular Safety in the Elderly (CanDRIVE) - Dr. Holly Tuokko, Centre on Aging, University of Victoria
2. From Concept to Results in Chronic Disease Management - Dr. Patrick McGowan, Centre on Aging, University of Victoria
3. The Aging Brain - Dr. Max Cynader, Director of the Brain Research Centre, Vancouver Coastal Health Research Institute and the University of British Columbia
4. Research Themes and Projects in BC - Dr. Lynn Beattie, Professor of Geriatric Medicine, University of British Columbia
5. The Knowledge Exchange Task Force - Ms. Flora Dell, Chair of the Knowledge Exchange Task Force, CIHR Institute of Musculoskeletal Health and Arthritis.

Ontario

1. Research on Aging in Ontario - Dr. Anne Martin-Matthews
2. Canadian Driving Research Initiative for Vehicular Safety in the Elderly (CanDRIVE) - Dr. Malcolm Man-Son-Hing, University of Ottawa
3. Knowledge Creation and Translation - Dr. Michael Borrie, St. Joseph's Health Care, London, Ontario
4. Unlocking the Secrets of Longevity - Dr. Gabrielle Boulianne, Senior Scientist, Hospital for Sick Children and Professor, University of Toronto
5. Individualizing Pharmacotherapy for Seniors - Dr. Lisa Dolovich, McMaster University
6. So No One Will Die Alone: A Study of Hospice Volunteering in Northwest Ontario - Dr. Mary Lou Kelley, Associate Professor, Lakehead University

Quebec

1. Research on Aging in Quebec - Dr. Yves Joannette, Research Director, Institut universitaire de gériatrie de Montréal (IUGM); Professor, Faculty of Medicine, Université de Montréal.
2. Unlocking the Secrets of Longevity - Dr. Gabrielle Boulianne, Senior Scientist, Hospital for Sick Children and Professor, University of Toronto
3. The Longitudinal NuAge Study - Dr. Hélène Payette, Professor, Department of Community Health Sciences, Faculty of Medicine and Health Sciences, Université de Sherbrooke; and Director, Centre of Research on Aging of the Sherbrooke University Geriatric Institute

Annex B: Summary Table of Research on Aging Priorities