COLLABORATIVE RESEARCH IN POPULATION HEALTH

Inter-Island Study of Population Health Meeting, February 17, 2001, 9:30 - 4:00 Taeknigardur, University of Iceland, Reykjavik

In 2001, the Institute has initiated a planning process examining the possibility of an international "Inter-island Study of Population Health." This undertaking remains very much a work in progress. The current status of the project is reflected in the Report posted below. Essentially, these are the notes (written by Wendy MacDonald) of an information and planning meeting held at the University of Iceland, February 17th.

Participants

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Introductions and Background

Geoff called the meeting to order at 9:30, and asked participants to introduce themselves. (Participant backgrounds are set out in Attachment One.)

Harry Baglole, of the Institute of Island Studies, University of Prince Edward Island, provided some background context for the meeting. The Institute of Island Studies was established in 1985 with a mandate which included developing a better knowledge and understanding of PEI itself, contributing to the formulation of public policy in PEI, and undertaking comparative studies of PEI and other islands. These interdependent roles have evolved over the years, with strong emphasis on the comparative research mandate in the early years of the 1990s, and an increasing role in public policy in recent years. Two years ago, the Institute launched an undergraduate minor in Island Studies, and currently, a graduate program emphasizing comparative public policy in islands is being developed.

The Institute's first major comparative research initiative was launched in 1992 with the international conference, An Island Living, in which over twenty island jurisdictions participated. That conference in turn led to the North Atlantic Islands Programme, a three-year research initiative exploring sectoral economic development in six North Atlantic islands (PEI, Newfoundland, Iceland, the Faroes, the Åland Islands, and the Isle of Mann.) While the initial research program has been completed, it has served as a foundation for a wider range of bilateral and multilateral collaborative research projects and exchanges, encompassing social and cultural domains as well as economic issues. Activities include an annual conference, the North Atlantic Forum, begun in 1998 in PEI, continued in Newfoundland in 2000, scheduled for the Åland Islands in the fall of 2001, and for Cape Breton in fall 2002. The group has also expanded to take in a larger number of jurisdictions, including the jurisdictions of Bermuda, the Isle of Skye, and Cape Breton as full members, and Tasmania as an associate member. A substantial amount of collaboration has taken place with Malta, and linkages are being developed with Greenland.

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Today's meeting, Harry noted, was intended to explore the potential for collaborative research in the health field. The initiative is still in the early stage of development, and the day's discussions would provide valuable information on the extent and nature of shared interests, and on the scope for joint efforts. He expressed his appreciation to those present for their participation.

Wendy then provided additional background on the work to date on a collaborative health research initiative. The idea had been preceded by a substantial research initiative in the education field, and some work in the area of culture. Health then presented itself as a major and as yet unexplored field of comparative study. Accordingly, informal discussions were begun within the NAIP in the summer of 2000, and were pursued at the North Atlantic Forum in September 2000, with positive results and strong interest from various quarters. Following the Forum, a brief concept paper was prepared by Wendy for the Institute, describing the project's rationale, possible scope, and potential partners, as a basis for further exploration. Subsequent meetings, telephone discussions, and e-mail contact with potential island partners provided further assurance that the concept was worth serious examination. In early January, a workshop was held at UPEI, drawing together potential PEI partners from the university, government, and the health sector. The workshop identified substantial local interest in the project, some potential sources of support, and a number of research priorities.

Thus far, the question, "Why islands?" had frequently arisen in discussions. To address this question, one must first consider the rationale for comparative research. The value of the findings of such research depends on the comparability of the jurisdictions, both those features which are similar and those which are different; and by the cause and effect relationships between those features and health status and outcomes. As such, a careful and thorough planning process is required to identify appropriate comparative research topics. However, the process of comparative research also brings many benefits in and of itself, including:

• innovation and knowledge transfer among participants, reaching down into health delivery and health policy systems;
• development of a network of researchers with shared interests;
• a better understanding of one's own system through the process of identification and analysis of variables; and
• a relatively non-threatening means of discovering and examining weaknesses in outcomes and opportunities for improved performance.

If the value of comparative research is accepted, then islands are excellent sites for such study, as their populations are more contained, and patterns and characteristics of population health and health determinants may be more distinctive and more readily identified than in mainland jurisdictions. As well, where the jurisdictions are sub-national, they offer microcosms of their national health care delivery systems.

The group of islands under consideration – PEI, Newfoundland, Iceland, and the Scottish Islands – are a particularly appropriate vehicle for comparison, as they share characteristics of scale and of peripherality which pose similar challenges for health care delivery, as well as common features in terms of level of development, economic structures, development challenges,and similarities in physical environment. On the other hand, substantial differences may exist in social, cultural, and behavioural norms, in health delivery systems, and in public policy on health determinants, providing interesting features for comparison. On a practical level, these jurisdictions generally have sophisticated and highly developed record keeping and statistical systems. As well, the established networks and relationships through the NAIP facilitate access to champions and appropriate partners in each of the jurisdictions. Finally, increasing opportunities and resources appear to exist in each jurisdiction for research in this area, given the growing awareness of the key role of population health determinants in population health status.

Discussions to date have raised two core questions at the heart of the work:

• Is this project seeking to use islands as a vehicle to learn about health?
• Or, is it seeking to use health research as a vehicle to learn about "islandness"?

In fact, the initiative brings together partners with an interest in both questions. The comparability of islands, and NAIP islands in particular, as identified above, makes it highly likely that fruitful health research opportunities can be identified and pursued. In turn, by pursuing those inquiries, it is anticipated that more light will be shed on whether, in fact, there are elements of "islandness" which directly or indirectly affect health.

The main themes suggested in the initial concept paper are to compare population health status, determinants of health, health delivery systems, and possibly public policy affecting health status. The project is intended to consist of two main phases: an initial scanning-and-scoping phase, and a second phase which will address in depth selected areas of mutual interest, with strong comparable information bases. This meeting is intended as the first step in that scanning process among potential island partners. It will identify areas of common priority, explore the degree of interest in collaborative research, and map out next steps. The findings of the meeting will suggest the extent of further broad exploration needed before the work focusses on specific projects.

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Health Status, Systems, and Research Priorities: Key Themes

Each jurisdiction then presented a descriptive overview of health status, health care delivery systems, health priorities, and research interests. These detailed presentations are contained in Appendix Two. Here, some key themes and areas of common interest are noted. In each case, the jurisdictions noting the theme are cited; however, this should not be taken to mean that the other jurisdictions do not have an interest in that topic, simply that it did not arise in the relatively short time allowed for each presentation.

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Discussion

Discussion following the presentations focussed on some of the themes of common interest noted above.

Safety at sea was identified as an area of significant interest to Newfoundland and Iceland in particular. It has relevance to other partners as well, although PEI's fishery is largely inshore and Scotland's is declining. Cuts and changes in quotas have brought about structural changes to smaller boats going further out to sea, which further increase the hazards of the industry. These risks are compounded by cultural attitudes which fatalistically accept a high level of injury and mortality. Education and training play a key role in overcoming this obstacle, and a trend exists in all the jurisdictions to strengthened requirements for such training as a condition of licensing. Nonetheless, safety in the fishery receives less attention by the Canadian and Scottish governments, generally, than does agricultural safety.

As such, a survey of safety at sea among participating jurisdictions was identified as a promising research opportunity. Such a survey could include statistics on accidents and survival; training requirements and programs; educational resources and materials; and institutional capacity (e.g. Newfoundland's Survival at Sea Centre).

In support of such an initiative, Sigridur noted that Iceland has a new registry of accidents. Data has been collected for years from a variety of sources, including hospitals, physicians, insurance companies, and police. The Directorate of Health is now working on a single, integrated database, in which each accident will be assigned a unique identifier, and classified as to context (work/home/leisure/ etc.) The registry will link to other registries for more detailed information, and will have the capability for staff to edit and correct data in case of discrepancies. Newfoundland does not have a comparable registry; only major accidents and injuries tend to be reported to the Workers Compensation Board. A survey would need to be carried out, with the cooperation of the fishermen's union, which includes all licensed fishers in the province.

The interface between primary and secondary care was noted as being of interest on several counts:

• disparities in access for rural and remote areas, and the resulting impact on outcomes;
• differences in structures and patterns of referral, leading to substantial variations in costs;
• differences in thresholds for referral in rural/remote and urban areas;
• coping strategies, including specialist outreach and medical evacuation.

Telemedicine, while a possible solution to some of these challenges, faces a number of issues, participants noted:

• Telemedicine appears best suited to a relatively narrow group of conditions, including X-rays, dermatology, emergency protocols, and possibly mental health.
• Security of data and privacy preclude use of the Internet.
• The requirement for staffing at each end reduces the cost savings, if any, of the approach.
• Rapid obsolescence of the technology is an issue.
• Generally, the approach is being promoted by the "technies" and faces the challenge of convincing the users.

Despite these considerations, telemedicine is being explored in some measure by all the jurisdictions at the meeting. Linkages and continuing education for remote practitioners was noted as a particularly promising application. Scotland has established a 5 million-pound Telemedicine Forum to bring telemedicine into broader usage. In Newfoundland, Memorial University's Telemedicine Centre has thirty years of experience in medical tele-education. Clinical activities, while accounting for a relatively small share of total activity, include tele-electroencephalograms, tele-ultrasonography, tele-nuclear medicine, child tele-psychiatry, and tele-consultation from remote sites such as nursing stations and marine oil platforms. Iceland has been engaged in some work with Norway, focussing on X-rays, dermatology, psychology, and pathology. PEI has a small telemedicine centre in its main hospital, linked to the IWK Children's Hospital in Halifax, as well as an innovative tele-hospice project which has won national awards for its support of home-based palliative care. On a simpler level, telephones are being used for such applications as counselling, therapy, help lines, and poison control. Consumer health information is becoming more and more widely available on the Internet.

The broad cultural and social context of health care was noted as another area of interest. Debates in North America have traditionally focussed on a public versus private dichotomy, and more recently on an acute versus community based dichotomy. However, the cultural context within which these issues are debated receives little attention. What are the health beliefs and values arising from culture and leading to health decisions and practices? How are people in middle age planning their use of health care? What are the differences in these beliefs and attitudes, and in the openness to changes and innovation, between rural and urban, between newcomers and long-established citizens, between traditional and new economy occupations? What are the factors driving people to cling to local hospitals and pursue costly equipment despite the lack of demonstrable benefit?

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Next Steps

Geoff indicated that the possible next steps identified to date were to hold a workshop in the summer of 2001 to explore opportunities further, and, if interest warranted, to follow up with an international Summer Institute the following year. He sought comment on this approach.

Participants agreed that a number of promising opportunities appeared to exist for collaborative research, which warranted further exploration. Two main constraints were identified: human and financial resources. While all participants faced these challenges in some measure, they appeared most significant for Iceland.

The many demands on existing human resources were noted as a major challenge facing collaborative effort by Iceland. While there is strong interest in research, the lack of doctors, particularly in the field of family medicine, poses obstacles to starting new projects. Some promising possibilities exist however, with Iceland's Faculty of Nursing, which is a fairly new program and offers graduate degrees, creating a pool of possible researchers (although the availability of supervisors may be a constraint). Geoff observed that in the PEI context, research tends to be done in government or at the university. With the growing pool of research funding available of late, it is easier to increase research through post-doctoral candidates than through physicians. Nonetheless, the growth in availability of research funds of late is creating strong demand for research personnel, and PEI may also face some constraints in finding personnel such as epidemiologists if the initiative proceeds.

With regard to financial resources, as noted above, both Scotland and Canada have recently increased their investment in health research, and a supportive climate exists at the national level in both jurisdictions for international collaboration. Within Canada, both Newfoundland and PEI have increased their funding of health research. Memorial University in Newfoundland has a policy of trying to promote European linkages, while UPEI has also increased its emphasis on such international relationships in recent years. While Iceland is also very supportive of international collaboration, their funding sources tend to orient such activities to the Nordic countries.

To address these considerations, it was agreed that:

• the research should be focussed on areas of shared high priority;
• the focus should be on projects that achieve synergy and leverage of existing research investments and personnel;
• possibly, further exploratory meetings could be held in Iceland, which would reduce the financial requirements on Iceland while equalizing them for the other partners.

As a next step, it was suggested that each jurisdiction prepare a paper, setting out information and statistics on some key themes which had emerged during the day's discussions:

• attitudinal and cultural factors affecting health
• health status, epidemiology
• specific health issues, such as safety at sea, asthma, cancer, etc. and health delivery systems.

The question of whether to pursue a single centrally organized initiative, or a network of projects was raised. It was noted that the NAIP had been a network, and that this approach had worked well. It was suggested that we proceed for now on the assumption that the initiative will be based on shared funding within a collaborative framework.

To carry the work further, it was agreed that an international steering committee would be established, with representation from each jurisdiction. Michael offered to serve on behalf of Newfoundland, while David agreed to represent Scotland, and Geoff to represent Prince Edward Island. Iceland subsequently has indicated that its representative will be Sigridur Haraldsdottir.

In conclusion, it was agreed that meeting notes would be prepared by PEI, and circulated to participants for their use to further explore the idea within their respective jurisdictions. Should interest continue to be strong, the next step might be to organize a workshop of two to three days for the summer of 2001, at which selected themes from among those identified above would be assessed in greater depth for their collaborative research potential.

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© 2001 Institute of Island Studies