Aboriginal Health Research News - September 2012

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Message from Dr. Malcolm King, IAPH Scientific Director

Meeting the Tri-Council Guidelines in Secondary Analysis of Health Data

As the Scientific Director, I have been asked a number of times how to consult or engage with the Aboriginal commun­ities in studies such as the secondary analysis of health data. An example could be the following: regional/geographical trends in service uptake or delivery directly concerning First Nation, Métis and Inuit people based on administrative data. Aboriginal people could be one of several sub­groups of interest. The inclusion of Aboriginal people and the associated subgroup analysis is a potential strength of such studies and very much needed given the paucity of data concerning the health of Aboriginal peoples, but meeting the Tri-Council guidelines has sometimes been challenging for researchers.

The Tri-Council Policy Statement (TCPS-2) does not require that researchers seek consent from individuals for the secondary use of non-identi­fiable information (article 5.5 application, p. 63), however if the data or biological materials can be linked back to the individual either directly or indirectly through linking with another dataset, then researchers must seek consent (see TCPS2 chapters 5 and 12).

In the case of research involving Aboriginal people, ethics boards would need to under­stand these requirements in the context of the special provisions outlined in TCPS2 Chapter 9 – Research Involving First Nations, Inuit and Métis Peoples of Canada. That is, if the data or biological materials being used are identifiable, then of course the requirements of TCPS2 for re-consent would apply. But even if the data for secondary use is non-identifiable, I think most ethics committees would view such secondary data analysis as fitting at least criterion (d) of Section 9.1, and therefore requiring engage­ment with the relevant community. This may not require individual level re-consent, which could be complicated, costly and time consuming, but some level of community engagement would be respectful and necessary.

In my view, an appropriate form of engagement for this type of research would be to form an Aboriginal advisory group, inclusive of people in the region(s) relevant to the group whose data is being analyzed. The advisory group could include Elders and community health work­ers. If, for example, the aim of the Aboriginal sub-group analysis were to compare regions or geographic zones, it would seem important to include Aboriginal people representing those zones in the advisory group. Researchers are nevertheless concerned that hav­ing to form an advisory group might dissuade them from studying such subgroups at all, which would inhibit Aboriginal health research. In my opinion, there is more harm done by unduly excluding Aboriginal participants from research; such exclusion would in fact be unethical. I don’t believe it is the intention of either Tri-Council or CIHR to limit research to non-Aboriginal people. Quite the contrary, ethics policies of this sort should be seen as enabling frameworks that help researchers to better structure their approach and relationships with First Nations, Inuit and Métis communities. These documents were developed in close collaboration with community mem­bers and represent established best practices for building research partnerships based on mutual respect. In fact, the ethics policies are really just a way to formalize what researchers should be doing anyway if they want to ensure quality data and relevant research.

For more guidance on research with Aboriginal People, I strongly encourage researchers to review Chapter 9 of the Tri-Council Policy on research and also to call the Secretariat of the Tri-Council Panel on Research Ethics for help interpreting the policy. In my opinion, the involvement of Aboriginal Peoples in second­ary data analysis is essential and more of it is needed. I welcome your feedback on this very important topic.

Australia, Canada and New-Zealand establish a new research partnership

The National Health and Medical Research Council (NHMRC) of Australia, the Canadian Institutes of Health Research (CIHR) and the Health Research Council (HRC) of New Zealand recently signed a trilateral letter of intent to improve research capacity in Indigenous peoples’ health. This agreement recognizes and builds upon each country’s strengths in Indigenous health research. The three countries will share expertise and support a cadre of Indigenous researchers to reduce the health disparities between Indigenous peoples and general populations. Under the partnership, NHMRC, CIHR and HRC have committed to developing a program of initiatives which will be implemented collaboratively over the next five years.

Pathways to Health Equity and Implementation Science

Nancy Edwards, Scientific Director
Institute of Population and Public Health

How can effective pre­ventive oral health care and diabetes interven­tions be scaled-up among diverse Aboriginal peoples who reside in a wide range of settings (remote, rural, urban)?
How do socio-cultural, geo-political and organ­izational influences mitigate or enhance the effectiveness of suicide prevention or tuberculosis control strategies?

These are examples of implementation science questions; they build on a solid understanding of what can work (efficacy studies) and what does work (effectiveness research). Implementation science extends these areas of inquiry, examining what works, for whom and under what circum­stances; and how interventions can be adapted and scaled up in ways that are accessible and equitable.

Implementation science yields important insights about the system and sub-systems into which interventions are introduced. Thus, rather than trying to control for or ignore context, this field of science examines interactions among the intervention(s), the context and potential bene­ficiaries. Heterogeneous contexts are important for studies in this domain. Therefore, research that involves comparisons such as those among jurisdictions, across different types of health care delivery systems or among communities with differing historical legacies or cultural roots can uncover important system influences on interven­tion strategies.

While implementation science is no panacea, it does provide a new paradigm for intervention research. Implementation science shifts the object of study from the intervention that happens to be within a context to an intervention that works within the real-world complexities of the system as a whole. This field of science requires the integration of com­munity and scientific know-how.

There is growing international interest in imple­mentation science as we try to extend the equitable reach (i.e. scale-up) of promising strategies. In a recent WHO report 1, Dr. Marie-Paule Kieny described implementation research as “a critical tool for providing the scientific evidence neces­sary for improving and scaling-up public health programmes around the world.” Authors of this report argued that “integrating implementation research within intervention programmes will support evidence-based policies and build robust programmes that withstand organizational and political change.” Similarly, Bosch-Capblanch et al.2 have recently called for research that “accounts for the complexity of health systems, political systems, and contexts.”

The Pathways to Health Equity Signature Initiative is poised to both benefit from and contribute to this field of science in Canada and internationally.

References:

  1. Implementation Research for the Control of Infectious Diseases in Poverty, World Health Organization, TDR Meeting, Kampala, Uganda, 2011.
  2. Lavis JN, Røttingen J-A, Bosch-Capblanch X, Atun R, El-Jardali F, et al. (2012) Guidance for Evidence-Informed Policies about Health Systems: Linking Guidance Development to Policy Development. PLoS Med 9(3): e1001186. doi:10.1371/journal. pmed.1001186

Have you heard?

Read all about it!  

The work of IAPH funded researcher Dr. Cynthia Jardine (U Alberta), provides insight from a different perspec­tive, as mentioned in this U Alberta News article titled “Through the eyes of youth—Participatory research in action.”

“The opportunity to see a community through the eyes of its youth has revealed rich and compelling stories from communities of Ndilo and Dettah in the Northwest Territories…”

Read the rest of the story here.

NIH Funding Available: OppNet, NIH’s Basic Behavioral and Social Science Opportunity Network, announces its second FY2013 RFA

Purpose: This funding opportunity encourages grant applications for infrastructure support to develop, strengthen, and evaluate transdisciplinary approaches and methods for basic behavioral and/or social research on the relationships among cultural practices/beliefs, health, and wellbeing. This includes an appreciation for more comprehensive understandings of the effects of relationships regarding cultural attitudes, beliefs, practices, and processes, on outcomes relevant to human health and wellbeing. Model animal research teams are welcome to apply. OppNet intends to commit $1,425,000 in FY2013 for approximately 5-7 awards. Future year amounts will depend on annual appropriations.

Application deadline: December 17, 2012

Check it out!

CIHR-IAPH, along with other CIHR insti­tutes, was featured in UK’s International Innovation magazine.

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