Shared Territory: Ethics across borders
With health research taking flight in East Timor the Menzies School of Health Research has an inspiring partnership with one of the world’s newest nations.
Reverend Daniel Marcal wears a bright batik shirt and glasses. At first he speaks through an interpreter, and then moves confidently into a stream of English.
“We want to become strong. Step by step. We need to strengthen the processes by which we do research so that it’s of the highest quality,” says Revered Daniel Marcal, member of the East Timor technical and ethical committee.
Personifying the enthusiasm and vigour typical of a young nation, three members of the Timor Leste Ministry for Health’s first medical and health research ethics committee – including Marcal have arrived in Darwin.
Over five days, with guidance from the Menzies School of Health Research, they’ll master the intricacies of running an ethics committee, including accepting, assessing, and approving research submissions.
“This is a very important relationship for us,” says Marcal. “We need to devise national guidelines for research and a standard operating procedure. Menzies works at an international level, so it can help us develop these.”
This partnership, however, goes far beyond the drawing up of guidelines and procedures. Last year Menzies signed a Memorandum of Understanding with the nation’s Ministry of Health.
The move fulfils a long-term Menzies objective: to ‘twin’ with the 10-year-old nation to assist in evidence-based, meaningful health research.
Menzies’ relationship with East Timor began back in 1999, when the organisation’s staff began working alongside Timorese in both clinical and research settings.
An early achievement included the first randomised clinical trial ever undertaken in Timor Leste, a trial of nutritional interventions in tuberculosis led by Menzies PhD student, Dr Nelson Martins.
Clinicians and public health advocates within the Northern Territory Department of Health were equally committed, dedicating time and funds in the area of communicable diseases.
“However, sustaining the Timor Leste collaboration was difficult. To develop this further, we needed renewed funding and someone with in-depth knowledge of its health system who could spearhead the projects and bring the clinical, public health and research fields together.”
In 2010, Menzies global health employee, Sarah Moon, the Health Minister Nelson Martins, and the Cabinet of Health Research and Development developed the concept of the twinning, based on the research needs of the Ministry of Health and the expertise that Menzies could provide. Other serendipitous developments boosted the project.
Former Menzies PhD student, Nelson Martins, had become East Timor’s health minister in 2008; and, around the same time, a number of Menzies health programs secured AusAID funding for East Timor-linked initiatives.
“The history combined with the groundswell of recent activity set everything in motion,” says Joshi.
“The twinning program gives us the opportunity to expand and to gain another perspective on health and health research, as well as on the process of conducting health research in resource-poor settings, which we’ve done in other countries.”
Poverty is rife in the small country and health indicators remain poor. “The country is comparable with Indigenous Australia in terms of access to healthcare, capacity, and some of the illnesses its people face. Menzies has transferable skills in these areas,” she says.
The engagement,has four main arms. The first is to build capacity among East Timorese researchers.
This involves fostering research interest, knowledge and skill among local clinicians and health researchers. So far, Menzies has teamed with practitioners at Dili Hospital and health faculty staff at the National University – specifically midwives and nurses.
“Some of the clinicians are interested in research but they don’t know the steps,” Joshi says. Without access to databases such as PubMED and software that interprets statistics, pursuing research is made harder – something Menzies hopes to remedy by demonstrating that useful health data can be generated at the local level.
Another of its objectives is setting up a research advisory group comprised of high-level health policy experts and East Timorese researchers. “The group will be a receptacle,” says Joshi. “It will look at what research is happening where and make recommendations for where funding could be best placed and what research is most needed.”
Menzies, in collaboration with the Cabinet of Health Research and the Health Management Information System in Timor Leste has systematically reviewed the country’s existing health data. The process identified key areas of research priority – covering, nutrition, safe motherhood, childhood illnesses (in particular respiratory, febrile and diarrhoeal diseases), and access to care.
Finally, there’s the ethics committee. With funding from the World Bank, committee members were nominated in 2010, and in May 2011, half the group travelled to Darwin for its first training session with Menzies – ‘Ethics 101: what is ethics?’ explains Menzies Ethics Administration Officer, Maria Scarlett.
“We also invited the visiting members to sit and observe a full Menzies ethics committee session, so they could see how ethics committees operate.”
With the country’s ethics committee established, Menzies’ task ahead is to raise the committee’s profile globally and to build guidelines on how the committee can proceed.
“Our ultimate aim is to secure more funding and to work with the committee in the long-term so that it can become fully accredited and functioning on an international stage,” Scarlett says. This will empower the East Timorese by ensuring rigorous governance and ethical standards around human subjects research.
Reverend Marcal is grateful for the support received thus far: “To back up our committee members from Timor Leste, we need good support from Menzies. We’re a new country and we need to learn from your experience.”
Though current AusAID funding runs out at the end of 2012, Scarlett and Joshi remain hopeful of the twinning project’s long future. The list of things-to-do grows by the day. As do the ambitions of those involved.
“We want to identify research champions, and to continue to support Timorese researchers to implement health research projects in their own country, monitored by their own ethical standards, and to renew partnerships between Menzies and East Timorese researchers to get joint studies underway,” says Joshi. “This is a new beginning.”