Community Consultation on Norfolk Island
Robert Smith, Project Manager of the Norfolk Island Health Study, recounts QUT’s trip to Norfolk Island to gather feedback on the 20 year follow-up study
Today we’re bringing you the second blog post about Norfolk Island. In this post, acting Project Manager of the Norfolk Island Health Study Robert Smith discusses the work that D/Prof. Lyn Griffiths and her team have done over the past 20 years on Norfolk Island, and their engagement with the Norfolk Island community to solicit feedback about our planned collaboration for the third phase of the study. At Variant Bio, it’s very important that we collaborate with researchers who understand the importance of truly engaging the communities with whom we partner, and we are pleased to present the excellent community engagement work that D/Prof. Griffiths and her team have undertaken.
If you would like to read a history of how a tiny island in the Pacific came to be home to descendants of British mutineers and the Tahitian women they kidnapped, you can read Part I here.
The Norfolk Island Health Study commenced in the year 2000, when Distinguished Professor Lyn Griffiths brought her team from the Genomics Research Centre to Norfolk Island to collect biological samples from Islanders in the hope of finding genes that could influence health conditions of concern to the Island community. The study also collected multiple health measures to inform the genetic research, and obtain a snapshot of the health of participants and the Island as a whole that could be used to plan for the future needs of the Island’s healthcare system.
The team made return visits to Norfolk Island in 2007 and 2010 to collect new samples and data. These included bone density screens and ocular health measures for detection of eye disorders, such as glaucoma. The Norfolk Island Health Study has been able to improve our understanding of how genetic variation flows down generations and identified genes that may influence cardiovascular disease, kidney disease, migraine, glaucoma and aging.
Now, in 2021, the Genomics Research Centre has entered into a collaboration with Variant Bio to return to Norfolk Island for a twenty-year follow up of the initial study, this time with a focus on assessing kidney disease. Before commencing new sample and data collection, however, D/Prof. Lyn Griffiths and her team members visited Norfolk Island to meet with the Norfolk Island community regarding the extension of the study, and the collaboration with Variant Bio.
Ahead of arriving on Norfolk, D/Prof. Griffiths contacted the editor of the Island’s newspaper, The Norfolk Islander, to discuss the upcoming visit and give Norfolk Islanders notice that she would be available for questions in-person upon arrival. Once the team arrived, D/Prof. Griffiths gave an interview on Norfolk Island Radio, where she spoke about the history and goals of the study, introduced the involvement of Variant Bio, and outlined what the collaboration means for this iteration of the project. D/Prof. Griffiths also provided her contact details, inviting anyone who wished to know more about the study to speak with her personally. Following the interview, several queries and supportive discussions were had with individual members of the Norfolk Island population.
People mainly had logistical questions about the study, such as when the study would be returning to the Island, how long researchers would be staying, what kind of measurements would be taken and where the study would be located. Overall, the Islanders were positive about the study, telling D/Prof. Griffiths:
“Good for the Island, interesting work. I was involved in the last two studies and happy to be involved again.”
“Keen to be involved. I have current kidney issues, so pleased to see the focus on this.”
“Very keen to be involved. My partner was the youngest person to be diagnosed with glaucoma on the Island for your last study.”
The research team also held specific meetings to discuss the project with a variety of leaders in the Norfolk Island community, both in the government and in healthcare posts including the former Chair of the Norfolk Island Health Committee, a long term advocate of the initial study, now a retired and respected member of the community. Discussing the full range of the study’s intended activities, this meeting set the stage for further contact with the community, providing information on Norfolk Island’s current affairs and the aspects of the study that would be of interest to the Island’s citizens.
The study team met with multiple members of the medical community, including the Hospital Administrator, the Island’s Wellness Coordinator (who drives social initiatives for the Island’s primary healthcare), Clinical Coordinator, Pathology Staff and the Clinical Consultative Committee (a group of citizens who assist the hospital in the development and delivery of community health initiatives). Discussion about the project was met with great positivity. Participants reviewed ways to help integrate study results with the Island’s medical system and ongoing community health plans, how best to use local health capabilities in the project, and made suggestions for participant recruitment. Ideas included attendance of study staff at Island festivals and public health awareness events about the study, as well as the practical aspects of returning information for participants who wanted to link their health results back to Norfolk Island Hospital. In the end, the team left with new ideas for when the study returned to the Island, including performing some of the biochemical testing directly on Norfolk Island.
The Norfolk Island Health Study also consulted with the Administrator and Chief of Staff of Norfolk Island, the representatives of the Australian Government on the Island. In this meeting, D/Prof. Griffiths provided a background of the goals of the study, explained what occurred during the prior visits, outlined Variant Bio’s involvement, reviewed benefit sharing, and the potential for integration with the Island’s health services. The Administrator and Chief of Staff were very supportive of the study, and made a number of suggestions to assist with freight and logistics for delivery of supplies as well as locations that could be used for study activities. The Administrator also indicated that they would report positively on the study to the Federal Government.
D/Prof. Griffiths and her team also met with multiple members of the Norfolk Island Council of Elders. The Elders are senior members of the main Norfolk Island families, nominated by each family group to serve the interests of Norfolk Island’s cultural heritage and advise the Government about cultural and social issues. The research team specifically met with the Substantive President and Acting President, as well as a council member who had formerly served as the international South Pacific Island Cultural Affairs Commissioner. The Elders were keenly interested in the continuation of the project, and had questions about the diseases being studied, how data would be shared, and how this aligned with the concerns of Norfolk Island’s population. They also asked about the scope and mechanisms of the benefit sharing due to Variant Bio’s involvement in the study. After the discussion, the Elders confirmed their positive sentiments about the project’s latest initiative and requested an informational summary to be presented at the next formal meeting of the Council. Following the presentation, the Council of Elders confirmed that the whole body supported the continuation of the project.
Part of engaging a community for involvement in research involves not just meeting with people in formal positions of authority, but also with people from different subsets within a community, to get a wide variety of feedback about a proposed project. To that end, D/Prof. Griffiths met with a representative of the Norfolk Island Youth Council, a committee of young people providing advice to the government on affairs affecting the Island’s youth. After discussions about the history of the project, the goals and intentions of the new visit and the role of Variant Bio, the Youth Council representative was very supportive of the project, saying they would promote it to the Council.
The research team engaged with other diverse community groups including the leaders of the local Returned Serviceman’s League (a club of those who served in the armed forces), the Quota Club (a women’s community service club), the Lion’s Club (a community service club), Rotary (a community service club), Probus (a social club for retirees), and the Men’s Shed (a club addressing men’s health). Each of these community leaders had a variety of questions about the project and its goals, with several inviting D/Prof. Griffiths to speak at meetings once she returned to the Island to commence the project.
After completing these meetings representing a broad cross-section of Norfolk Island’s leaders and citizens, D/Prof. Lyn Griffiths and her team were buoyed by the warm welcome of the Norfolk Islanders and their positive reception of the upcoming visit. With their plans solidified, the team is looking forward to returning and beginning the six-month process of recruitment and data collection to continue this long running research and extend its scientific and health insights into the Norfolk Island population.
