Guidelines for Researchers on Health Research Involving Māori VERSION 2 - PDF

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Guidelines for Researchers on Health Research Involving Māori 2010 VERSION 2 Health Research Council of New Zealand Published in 2010 by the Health Research Council of New Zealand PO Box 5541, Wellesley

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Guidelines for Researchers on Health Research Involving Māori 2010 VERSION 2 Health Research Council of New Zealand Published in 2010 by the Health Research Council of New Zealand PO Box 5541, Wellesley Street, Auckland, New Zealand Telephone , Fax , This document is available on the Health Research Council of New Zealand Website: ISBN Table of Contents Table of Contents...3 Introduction...1 The Purpose of the Guidelines...2 Why Involve Māori in Health Research?...3 The policy environment for health research...3 The Treaty of Waitangi...4 Baseline assumptions...4 Responsiveness to Māori...6 Considerations for researchers...6 Kaupapa Māori research...7 Approaches to Māori health research...7 Why Consult?...9 Research partnerships and co-operation...9 Research topics and design...9 Defining a research topic...9 Research design...10 Resolving potentially difficult or contentious issues...10 Maximising the benefits of research...10 Researcher development...10 Dissemination of results...11 Other opportunities...12 When to Consult?...13 Is consultation required?...13 Responsibility of host institutions...13 Key times to consult...13 Early in the research design...13 Throughout the project...13 Dissemination of results and beyond...14 Who to Consult?...15 Consultation advice...15 The first step...15 Seeking external advice...15 Consultation process...16 Māori health organisations...16 Māori health research units...16 Māori health care providers...17 Local Māori representative organisations...17 Special issues...18 Ethics review of health research proposals involving Māori...19 A Consultation Checklist...21 Preliminaries...21 Preparations...21 The face-to-face consultation...21 Post-consultation...21 References and Further Reading...22 Ethics guidelines...22 Government policy...22 General Māori health...22 Kaupapa Māori research...22 Issues in research with Māori...22 Websites...23 Appendix 1: Te Ara Tika. Guidelines for Māori Research Ethics: A framework for researchers and ethics committee members...24 Glossary of Māori terms.47 1 Introduction The Māori Health Committee of the Health Research Council of New Zealand (HRC) has produced these guidelines to assist researchers who intend undertaking biomedical, public health or clinical research involving Māori participants or research on issues relevant to Māori health. This includes projects focusing on Māori as a cohort and as part of the wider population being studied. This is a revision by the Māori Health Committee (MHC) of the guidelines released in The guidelines will inform researchers about consultation and the processes involved in initiating consultation with Māori. The purpose of any consultation is to ensure that research contributes to Māori health development whenever possible. This consultation is also the foundation for co-operative and collaborative working relationships between researchers and Māori organisations and groups. Version 2 of these Guidelines was created in 2010 to incorporate Te Ara Tika. Guidelines for Māori Research Ethics: A framework for researchers and ethics committee members as an appendix. Te Ara Tika outlines a framework for addressing Māori ethical issues within the context of decision-making by ethics committee members. 2 The Purpose of the Guidelines The MHC has produced these guidelines to help develop: Research partnerships between health researchers and Māori communities or groups on issues important to Māori health. Research practices which ensure that biomedical, clinical and public health research effectively contributes to Māori health development whenever possible. All health research conducted in New Zealand is of relevance to Māori. If researchers are intending to embark on any health research that involves Māori participants, then these guidelines may assist the research team in developing a research project in a culturally appropriate way and in a way that is responsive to Māori. For more information on research of relevance to Māori health, researchers should refer to the HRC s Nga Pou Rangahau Hauora Kia Whakapiki Ake Te Hauora Māori The Health Research Strategy to Improve Māori Health and Well-being and the Ministry of Health s He Korowai Oranga Māori Health Strategy. Researchers working within institutions also have access to assistance from established Māori advisory and ethics committees and these committees can be consulted as to the relevance of the research to Māori. The guidelines are written specifically for applicants for HRC funding though they will generally assist with applications for funding from other sources. The guidelines provide an explanation of the MHC s requirements of research proposals which will involve Māori participants or a Māori health issue. These guidelines are also a reference and guide for referees and committee members who assess research proposals. Applicants for HRC funding should refer to these guidelines before completing HRC research proposal applications and the National Application Form for Ethical Approval. These guidelines should also be read in conjunction with the HRC Guidelines on Ethics in Health Research and the relevant application form guidelines. The MHC s intent in these guidelines is to establish research practices which ensure that the research outcomes contribute as much as possible to improving Māori health and well-being, while the research process maintains or enhances mana Māori. 3 Why Involve Māori in Health Research? Māori are the tangata whenua of New Zealand. As a Treaty partner and a priority population requiring appropriate health intervention, Māori involvement in health research is critical. Māori present disproportionately negatively in the majority of health and well-being statistics that have been gathered nationally. The HRC s desire to increase Māori participation in health research arises from an intention for HRC-funded research to contribute as much as possible to the improvement of Māori health and well-being. This intention is reinforced by a combination of government policy, a desire to reduce Māori health disparities, and recognition of Māori as tangata whenua. Implementing these guidelines will often require additional work and effort however, they should be seen as a way to enhance the quality of the research and the outcomes which are achieved. The policy environment for health research As the Crown s purchase agent for health research, the HRC s overall purpose is ...to improve human health by promoting and funding research (Health Research Council Act 1990, section 4). The ownership of HRC rests with the Minister of Health and the Government s New Zealand Health Strategy, released in December 2000, identifies priority areas and aims to ensure that health services are directed at those areas that will ensure the highest benefit for our population, focusing in particular on tackling inequalities in health. The need to improve Māori health is reflected throughout the principles, goals and objectives of the New Zealand Health Strategy. Two specific goals to improve Māori health provide for Reducing inequalities in health status and Māori development in health. In relation to the first goal, the objective is to: Ensure accessible and appropriate services for Māori. In relation to the second goal, the objectives are to: Build capacity for Māori participation in the health sector at all levels; Enable iwi/māori communities to identify and provide for their own health needs; Recognise the importance of relationships between Māori and the Crown in health services, both mainstream and those provided by Māori; Collect high quality health and disability information to better inform Māori policy and research, and focus on health outcomes; and Foster and support Māori health workforce development. The Ministry of Health s Strategic Research Agenda for He Korowai Oranga has three objectives: Continue to build an evidence base that contributes to the achievement of whanau ora, more effective service delivery for Māori and improved health and disability outcomes for whanau; Invest in high quality research and evaluation that contributes to the achievement of whanau ora, more effective service delivery for Māori and improved health and disability outcomes for whanau; 4 Build Māori health research capacity that contributes to the achievement of whanau ora, more effective service delivery for Māori and improved health and disability outcomes for whanau. The HRC is also accountable to the Minister of Research, Science and Technology. Pursuant to Operating Principles in the 2007/2008 Output Agreement with the Minister of Research, Science and Technology, the HRC is required to contribute to Māori advancement and development. Separate but complementary goals are used in Vote Research, Science and Technology to align research activities to the aspirations and needs of Māori. Māori development research is research carried out to consolidate and develop Māori knowledge and to deepen the Māori research skill base. This relates in particular to Article II of the Treaty of Waitangi. Māori advancement research is research that addresses the significant disadvantage of Māori relative to non-māori in many areas and relates to Article III of the Treaty of Waitangi. The HRC will invest in research projects that contribute to Māori development under the Māori Knowledge and Development output expense. The Council will also ensure that investments it makes contribute to Māori advancement under all other relevant output classes. From those policy directions, there is recognition of a need for greater Māori involvement not only in Māori health research but in all areas of research which could result in health gain for Māori. As a consequence the HRC is seeking to support quality research that both involves Māori and has a resulting potential for increased health gain for Māori. The Treaty of Waitangi The Treaty of Waitangi is the founding document of New Zealand. The principles of partnership and sharing implicit in the Treaty should be respected by all researchers and, where applicable, should be incorporated into all health research proposals. 1 The HRC states its commitment to operate according to the principles of the Treaty of Waitangi in its Annual Report to Parliament. The HRC is committed to building both a sustainable Māori health research capacity and long term research partnerships between non- Māori researchers and Māori groups and communities. The underdeveloped nature of the current Māori health research workforce requires that partnerships between Māori communities and non-māori researchers are made. Thus, collaborative research between Māori communities and non-māori researchers is a key part of the accelerated development strategy for a Māori health research workforce. Such partnerships may provide training opportunities for emerging Māori researchers as well as providing information that contributes to Māori health development. Baseline assumptions This document was developed in the understanding that: Intending researchers are familiar with the principles of the Treaty of Waitangi, particularly that of partnership, and its implications for Māori health; Researchers are aware that informed consent can be required from both individuals and representative organisations (whanau, hapu or iwi - see the HRC Guidelines on Ethics in Health Research); 1 Guidelines on Ethics for Health Research, Health Research Council of New Zealand, 2002, p.1. The intended research is an ongoing collaboration between researchers and Māori communities or groups; The intended research is being undertaken to help address the significant differences in Māori and non-māori health status; The researchers are committed to the goal of developing a high quality research project and the necessary processes required to ensure its effective implementation and completion. 5 6 Responsiveness to Māori The HRC is required to demonstrate that its investment policies and assessment processes are responsive to the needs and diversity of Māori. Whilst this may be reflected in the alignment of individual research proposals to Māori Development and/or Māori Advancement, it is also an expectation that research provider institutions demonstrate the quality and extent of their partnership and relationship with Māori. Researchers should discuss with their host institution their policies and procedures with respect to consultation with Māori. The HRC may audit institutions to ensure appropriate processes are in place. To ensure that host institutions have met this requirement, the HRC requires a declaration on the Administrative Agreement, which forms part of each application, that consultation with Māori has taken place. Considerations for researchers In any research on a Māori health issue and/or involving Māori as participants, researchers need to start initial consultation and conversations with a variety of Māori and Māori groups before putting the research proposal together. Initial considerations should include the following: Does the research topic involve Māori as a population group? How will this proposed research project impact on Māori health? What are the benefits for Māori? How will Māori be involved? (e.g. as researchers, participants, advisors etc.) Which Māori could possibly be involved in this research project? If Māori researchers are involved in the research team, can a Māori researcher be the lead researcher? Although this is not meant to be an exhaustive list of initial questions and considerations, it is designed to be a guide on what types of considerations researchers need to be cognisant of when devising a new research proposal. It is extremely important, and strongly recommended, that researchers consult with Māori prior to a research proposal being devised. The benefits of including Māori in initial discussions about a new research proposal are huge. The benefits to the researcher/research team include: Providing an opportunity for the researcher to articulate a research question to a particular audience; Providing the opportunity to develop clarity around the proposed project, its aims and its expected outcomes; Providing the opportunity for input and contributions by others to add to, build on and refine a proposed project; Building appropriate relationships in the initial stages of the research which will become invaluable later on for the success of the proposed project; Being able to discuss, develop and provide opportunities for building Māori workforce capacity from within the community. The benefits for Māori include: Providing the opportunity for a voice in a project that may affect their own region, whānau, hāpū or iwi, or Māori generally; 7 Providing the opportunity for meaningful engagement in the development of a research project which will be beneficial for Māori; Providing the opportunity to discuss and develop their own research ideas that are relevant research topics for their particular whānau, hāpū or iwi, or Māori generally; Providing the opportunity for community researchers to be involved in a research project of relevance to them and their community. Kaupapa Māori research There has been a growing movement by Māori to acknowledge Māori ways of knowing and conducting research. This philosophy has been encapsulated in the term kaupapa Māori research. It is important for all researchers to have an awareness of kaupapa Māori research. Kaupapa Māori research is just one part of the larger picture of indigenous research and the growing field of writing by indigenous academic writers that analyses indigenous ways of knowing and doing research. The emergence of indigenous research methodologies and theories, and kaupapa Māori research in particular, is a celebration and affirmation of indigenous ways and worldviews. Kaupapa Māori research is philosophy, theory, methodology and practice of research for the benefit of Māori which is also produced by Māori. Critical to any research with Māori (as well as other indigenous peoples) are some fundamental questions: Who defined the research problem? For whom is the study worthy and relevant? Who says so? What knowledge will the community gain from this study? What are some likely positive outcomes from this study? What are some possible negative outcomes? How can the negative outcomes be eliminated? To whom is the researcher accountable? What processes are in place to support the research, the researched and the researcher? 2 For non-māori researchers who are conducting research that involves Māori health issues and/or involves Māori participants, kaupapa Māori research provides a guide for researchers considering their responsiveness to Māori. Approaches to Māori health research Researchers should also make themselves aware of the range of approaches to Māori health research, for example, kaupapa Māori research, Māori-centred research and research where Māori are involved as participants. The following chart provides the general characteristics of each type of research: 3 2 Smith, L. T., Decolonizing methodologies: Research and Indigenous peoples, New York: Zed Books, 1999, p To read more see Cunningham, C. The Foresight Project Implementation. Māori Research and Development, Healthcare Review Online. 3(2) February 1999. 8 Characteristics Research Involving Māori Māori-Centred Research Kaupapa Māori Research Description Research where Māori are involved as participants or subjects, or possibly as junior members of a research team; Research where Māori data is sought and analysed; Research where Māori may be trained in contemporary research methods and mainstream analysis. Research where Māori are significant participants, and are typically senior members of research teams; Research where a Māori analysis is undertaken and which produces Māori knowledge, albeit measured against mainstream standards for research. Research where Māori are significant participants, and where the research team is typically all Māori; Research where a Māori analysis is undertaken and which produces Māori knowledge; Research which primarily meets expectations and quality standards set by Māori. Examples Analysis of ethnic differentials in disease rates; genetic study of familial cancer. Longitudinal social science study of Māori households. Traditional study of cosmology; study of cultural determinants of health. Control Mainstream. Mainstream. Māori. Māori Participation Minor. Major. Major, possibly exclusive. Methods/tools Contemporary mainstream. Contemporary mainstream and Māori. Contemporary mainstream and Māori. Analysis Mainstream. Māori. Māori. 9 Why Consult? Consultation is a vital step in the development of a research project that involves Māori - either as participants or when the topic is of particular relevance to Māori health. The consultation process can lead to the development of research partnerships, the identification of the most useful research design methods, the resolution of contentious issues, and the maximisation of the potential health outcomes. Research partnerships and co-operation Consultation is also an excellent way of arriving at and sustaining a research partnership with Māori researchers and/or communities. To avoid suspicion and build trust meaningful consultation will need to take place. Despite the urgent need for high quality Māori health research, it is common to encounter a perception among Māori that they are over-researched, and that much previous research has been, at best, of no benefit to Māori and at worst, actively disempowering. The researchers involved may not have intended their activities to be viewed with such misgivings. It is nevertheless important that these issues are considered and that efforts are made to addre
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