Kupu Taurangi Hauora o Aotearoa

1. Kupu Taurangi Hauora o Aotearoa

2. Health and Disability Consumer Representative Training MODULE THREE Evidence base

3. Welcome and introductions Who you are Where you’re from What you want to get out of the training today

5. Evidence base

6. Goals for the day • To understand the cultural context and equity issues for different socioeconomic and ethnic groups in New Zealand’s health and disability sector. • To increase your knowledge about research in health and disability sector as the evidence base for change and improvement. • To learn the processes of clinical trials and how you can be involved in these.

7. Definitions (New Zealand Medical Association, nd)

8. Health inequities in New Zealand Health inequities are defined as: ‘... differences which are unnecessary and avoidable… and are considered unfair and unjust. They do not occur naturally and are not random but are the result of social and economic policy and practices.’ (Ministry of Health 2004)

9. Health inequalities in New Zealand There are significant inequalities in health between socioeconomic groups, ethnic groups, people living in different geographical regions and males and females. (Reid & Robson 2007) Ethnic identity is an important dimension of health inequities. Māori and Pacific peoples experience lower life expectancy and health disadvantage across most mortality and morbidity indicators compared with pākehā. (Harris 2012)

10. Inequities in health for Māori and Pacific peoples Māori populations still have higher levels of unmet need for GP care than non-Māori and receive a lower quality of care under treatment for some conditions. (Ministry of Health 2010) Compared with the total New Zealand population, Pacific peoples have poorer health status across a wide variety of measures, including child and youth health, risk factors leading to poor health and long-term conditions. (Ministry of Health 2010)

11. Health inequalities for migrant, refugee and Asian communities New Zealand’s migrant, refugee and Asian populations are increasing and facing increasing health issues. (www.moh.govt/asian) Group workshop: What are the barriers (if any) to accessing health services for these population groups?

12. Addressing inequalities The district health boards have a statutory responsibility under the New Zealand Public Health and Disability Act 2000 to: • reduce health inequalities in their regions. • improve outcomes for Māori.

13. Next three topics Health and disability research Clinical trials Consumer involvement

14. Health and disability research The Health Research Council of New Zealand is a Government agency responsible for managing the Government’s investment in health research. (www.hrc.govt.nz)

15. Ethics of including consumers in research The Health Research Council (HRC) is committed to ensuring that all research involving human participants is based on good science, meets ethical standards and complies with international best practice.  To achieve this: • all health and disability research involving human participants funded by the HRC requires appropriate ethical approval from an approved ethics committee in New Zealand • HRC-funded clinical trials, innovative treatment evaluation or community intervention studies are adequately monitored, to ensure the safety of participants and the integrity of the collected data are protected. (www.hrc.govt.nz/ethics-and-regulatory)

16. Accessing research funds Health and disability researchers can access funds from a range of organisations including: • District health boards • Cancer Society of New Zealand • New Zealand Breast Cancer Foundation • drug companies • private organisations, such as the Hugh McKenzie Trust • Lottery Grants

17. Examples of funded research • ‘Mechanisms of obesity and type 2 diabetes; insights from bariatric surgery’ 12 months, $83,333, University of Otago • ‘Health housing index and Māori health’4 months, $5000, Massey University 3. ‘Towards a Pacific Island definition of deliberate self harm’10 months, $10,000, University of Auckland

18. Cochrane Consumer Network This website has three very good videos about consumer involvement in health research and evidence-based care consumers.cochrane.org/introduction-consumer-involvement-collaboration

19. Consumer involvement in research Active involvement by consumers: • must include informed and explicit consent • benefits: • the quality and direction of research itself • the research development process • people affected by health and disability issues.

20. Consumer involvement in research ‘Consumer involvement in research relates to an active relationship between consumers and researchers in the research process and leads to research of greater quality and clinical relevance due to the unique perspective that consumers bring to a research project.’ (Boote et al 2002)

21. Why is the consumer voice important to health research? • Helps promote reliable, relevant research important to consumers and carers. • Presents the needs and views of consumers to the research community. • Encourages research questions to include social and emotional aspects of health often missing from clinically led research. • Ensures issues important to consumers are identified and prioritised.

22. Clinical trials A clinical trial is defined as a prospective scientific experiment usually conducted to assess the safety and effectiveness of an intervention in groups of subjects. Interventions can be: diagnostic, preventative or therapeutic, and can include drugs, biologics, medical devices or methods of screening, or procedures to improve the quality of life. (www.researchreview.co.nz)

23. Randomised control trials Patients are assigned at random either to receive a new drug (the standard treatment for that disease), or a placebo (that is, a sugar pill which has no effect). These are followed up in exactly the same way in terms of care and treatment received (for example, procedural tests, outpatient visits) and then compared. Randomisation helps to ensure the groups in the trial have similar characteristics, making it easier to compare outcomes between groups. (www.researchreview.co.nz)

24. Benefits to consumers • Access to a novel treatment before it is widely available or access to the global standard comparator (which may not be freely available in New Zealand). • Close medical oversight and regular access to study nurse and physician. • Close scrutiny of adverse events. • Provision of care within a health care facility committed to improving best practice. (www.roche.co.nz)

25. Example of a clinical trial The Australia and New Zealand Breast Cancer Trials Group conducts an independent, collaborative breast cancer clinical trials research programme. Consumers with an interest in breast cancer clinical trials research are encouraged to join IMPACT – Improving Participation and Advocacy for Clinical Trials. (www.anzbctg.org)

26. Two examples of clinical trials in New Zealand These are currently being conducted worldwide, including in NZ by Roche NZ: • A study of a drug for patients with uncontrolled asthma on inhaled corticosteroids. • A study to compare subcutaneous versus intravenous administration of a drug for patients with moderate to severe active rheumatoid arthritis.

27. Summary • Not everyone gets treated the same or has equal access to health and disability support services, and this can result in inequalities for Māori, Pacific peoples, Asian and other minority groups. • Health science is complex and ever-changing, with new research contributing to new treatments. • Consumer involvement in setting up research is important and so is the opportunity to be offered the choice to give informed consent to participate in clinical trials.

28. Questions?Comments?Evaluation