  |
|
|
||||
|
||||||
| Journal of the New Zealand Medical Association,
06-August-2004, Vol 117 No 1199
|
||||||
|
Maori responsiveness in health and medical research:
clarifying the roles of the researcher and the institution
(part 2) Andrew Sporle, Jonathan Koea
This paper attempts to clarify the issues regarding
consultation with Maori (in the development of biomedical and clinical
research), and follows an earlier paper reviewing nine key areas relevant to
Maori responsiveness that can be readily addressed by researchers in their
proposals.1
In this paper, the development of the requirement for Maori
responsiveness for health research is briefly outlined—to show that the
Maori consultation process follows similar requirements to the rest of the
health sector, and is unlikely to change in the foreseeable future.
Some institutional initiatives have been established to
assist researchers developing proposals. However, research-focused consultation
currently has not been developed at the institutional level, which (if
implemented) would be an effective means of minimising the work of researchers
and Maori communities/organisations alike, while generating a proactive set of
clear research guidelines.
The development of the consideration of Maori responsiveness in Crown-funded health researchThe consideration of Maori
responsiveness in research is not new and has been driven by policy and
legislative activities of successive governments for over a decade. The need to
increase the contribution of health research to improving Maori health and
accommodating specific cultural issues in the research process were raised by
the official review of health research that recommended the creation of the
Health Research Council (HRC).2
The Health Research Council Act (1990) sought to address
these issues via the creation of a Maori Health Committee as a standing
committee of the HRC responsible for advising on research ‘into issues
that affect Maori people, with particular reference to research impinging on
cultural factors affecting
Maori
people’.3
In addition, the Health Research Council Act required that
the HRC Ethics Committee included membership with knowledge of tikanga Maori
(Maori lore). These functions of the HRC were further reinforced by the
1996 Policy Guidelines from the
Minister of Health to the HRC.4 These
guidelines were intended to ensure that the HRC’s activities meshed with
the current priorities of the rest of the health sector. In 1999, the Ministry
of Research Science and Technology published its
Blueprint for Change—a statement
of policies and procedures for the whole of the Crown investment in research
science and technology.5 This document set out
ten key stewardship expectations for all Crown purchase agents against which
their performance would be assessed. Responsiveness to the needs and diversity
of Maori was one of these expectations.
The recent structural changes effected by the New Zealand
Public Health and Disability Act 20006 have
reinforced the need for all aspects of the health and disability sector to be
responsive to the health needs of the Maori population. As outlined in the New
Zealand Health Strategy, the
Ministry of Health
wants information that will improve Maori Health, and the community wants
research of relevance,7 thus making the
Maori responsiveness requirement relevant to health research for the foreseeable
future.
Researchers and Maori responsivenessIn seeking to determine the Maori
responsiveness of their intended project, some researchers choose to consult
directly with Maori researchers and/or organisations. Unfortunately, this
creates an additional and un-remunerated workload for Maori researchers and
organisations, distracting them from their own activities and (in the case of
Maori researchers) contestable funding applications. The consideration of the
Maori responsiveness of an intended research project involves several key steps,
most of which are simple extensions of the usual processes in developing a
research idea.
The
first step is to consider the importance of the health issue for Maori. This can
be included in the literature search and review—with
Hauora8
and
Our Health, Our
Future9
being excellent starting points. Where published information is not available,
anecdotal evidence may be available from clinical colleagues, or some
information may be available from the New Zealand Health Information Service
(NZHIS) or the local district health board (DHB).
If the topic is relevant to Maori health, then determining
how to ensure the project can realise any potential contribution to Maori health
involves learning from approaches used in prior or current projects in their own
or similar fields. There is a rapidly developing experience in a range of Maori
responsiveness strategies amongst mainstream researchers in the biomedical,
clinical, and public health fields. A combination of consulting the literature
and talking with peers is an efficient means of determining possible effective
strategies for new projects. It also enables the possible use of other
researcher’s pre-existing networks with Maori organisations.
The third step involves the identification of end-user
organisations related to the research topic. Within the identified
organisations, there may be Maori-focused sections or staff, or there may be
specific Maori organisations with a dedicated interest in the proposed topic. As
with any end-user relationship, working with Maori in such organisations (or
Maori-specific organisations) benefits researchers by the application of their
work, and by the possibility of a relationship that reaches across a range of
projects. The relationship may also be useful in the development of research
ideas, recruitment of participants, and dissemination of results. The benefit
for Maori in these organisations is that they get to help develop research that
is relevant and addresses their needs as a service or policy provider. The
resulting research also has possibilities for the development of their workforce
or even new services.
A fourth step involves the researcher referring to any
institutional codes of practice on the Treaty of Waitangi or Maori
responsiveness issues in research, especially if their project involves Maori as
participants. Some host institutions for researchers have developed (or are
developing) such codes of practice. If no guidelines exist, then researchers
should consider lobbying their institution to develop locally relevant policies
and procedures in line with the requirements of the HRC.
If significant research-related issues have not been
clarified and resolved (by these processes), then researchers should consult
with institutional-resource people. For researchers in DHB settings, this
involves working through the issues with the research manager and/or Maori
management staff in the relevant sections of the organisation. Some universities
(eg, University of Otago) already have staff to work with researchers on Maori
responsiveness activities—while others, such as Auckland University, have
developed processes for pre-submission review of applications.
A Maori consultation framework for research
The HRC guidelines were intended to provide advice
to individual researchers rather than all persons involved in the research
process. Efficiency and Treaty of Waitangi arguments indicate that much of the
consultation should take place at the institutional
level.11 Consultation with Maori is already a
requirement of DHBs12 via the New Zealand
Public Health and Disability Act—and Treaty of Waitangi issues feature in
most University charters.
Currently, most of the consideration of Maori responsiveness
issues occurs late in the research development process (once the research idea
or even the design has been formulated). As a result, opportunities are missed,
or researchers are faced with the prospect of additional work-amending research
proposals late in development.
A possible alternative process is outlined in Figure 1,
where the host institution is responsible for the consultation and for ensuring
the Maori responsiveness of research activities.
Figure 1. A framework outlining the interrelationships
between host institutions, researchers, Maori end-users, ethics committees, and
mana whenua.
(HRC=Health Research Council; FRST=The Foundation for Research, Science and Technology.) To view
Figure 1, refer to the PDF version of this paper
Locating the responsibility for consultation with host
institutions ensures that the universities and DHBs operate as Crown agents, and
negotiate research polices and practices as part of their consultation and
partnership activities with mana whenua (people with authority over the region).
In this model, the formulation of Maori responsive research
policies and practices are a specific outcome of the operation of the Treaty of
Waitangi relationship between the host institution and mana whenua. Such
policies would then be available to all institutional researchers, and be able
to guide research proposal development from its inception in a similar manner to
other institutional policies.
These policies would involve institutional guidelines for
researchers that could clarify acceptable practices regarding involvement of
Maori participants, use of tissue samples, use of Maori genetic material in
research, intellectual property issues with regard to indigenous flora and
fauna, and when consent is required and how procedures for obtaining it.
The document could also outline unacceptable practices as
well as practices that would require further consultation and negotiation to
resolve. In the case of procedures for obtaining consent, it would also clarify
the consultation mechanisms and points of contact that the institution or
researcher would engage with. The policies could also include local research
priorities for Maori wellbeing, relationships of mana whenua with any
institutional ethics committees, and possibly even a co-ordinated approach to
relationships with mainstream and Maori end-users for research on specific
topics (eg, National Heart Foundation and Te Hotu Manawa Maori for research on
cardiovascular health and health services).
This approach would provide the institutions, ethics
committees, and funding bodies with clear mechanisms for assessing the Maori
responsiveness of an intended research project. It would also provide a way for
Maori responsiveness practices to be developed via a combination of precedent
and ongoing consultation. Where there is more than one research institution (eg,
a DHB and a university) within a region, this approach would enable to common
local research policies to develop.
The researchers would benefit by having clear guidelines to
follow that could be referenced in any funding or ethical application.
Furthermore, researchers could then focus on the other determinants of their
research interest, including their relationship to the endusers of their work.
Consultation would be limited to those circumstances defined by institutional
guidelines (which would be signalled well in advance), and institutional
consultation mechanisms would be provided. This would also remove (from mana
whenua and Maori organisations) the burden of multiple consultations from
individual research proposals.
ConclusionsThe introduction of Treaty of
Waitangi considerations and Maori responsiveness requirements has been
undertaken to ensure that the Crown’s investment in research science and
technology contributes to Maori development whenever possible. Unfortunately,
however, it introduced a further degree of uncertainty into the funding- and
ethical-review application processes.
This uncertainty could be removed altogether by the
provision of institutional policies on Maori responsiveness in research,
especially if those policies were the result of institution-led consultation and
negotiation with local Maori representative organisations. Such polices would
also serve to guide the activities of ethics committees and funding bodies in
their assessment of research proposals.
Author information:
Andrew Sporle, Lecturer/Research Fellow; Jonathan Koea, Hepatobiliary Surgeon,
Department of Surgery, Auckland Hospital, Auckland
Acknowledgements:
Andrew Sporle is funded by a grant from the Foundation of Research
Science and Technology.
The authors thank Naida Glavish (Chief Advisor Tikanga to
the Auckland District Health Board), Kris Macdonald (General Manager Maori
Health, Auckland District Health Board), Dr Bruce Scoggins (Chief Executive) and
Louisa Wall of the Health Research Council of New Zealand, and Professor Cameron
Grant for their insightful and critical review of earlier drafts of this
manuscript.
We also gratefully acknowledge Dr Cindy Kiro
(Children’s Commissioner) and the Research Development Office of the
Auckland District Health Board for their assistance in establishing and
administering the Maori Research Review Committee.
Correspondence:
Jonathan Koea, Clinical Associate Professor, Clinical Advisor Maori Health,
Department of Surgery, Auckland Hospital, Private Bag 92024, Auckland. Fax: (09)
375 4334; email: jonathank@adhb.govt.nz
References:
|
|
||||
| | Current
issue | Search journal |
Archived issues | Classifieds
| Hotline (free ads) Subscribe | Contribute | Advertise | Contact Us | Copyright | Other Journals |
|