Sitting among the members of a displaced community in Puttalam a few years ago, Dr. Chesmal Siriwardhana found himself thinking about the ethical problems around health research.
To get to this point – where he was able to meet people who had been driven out of their homes by the LTTE, had been displaced for many years, and were now considering a return to their lands in the north of the island – Siriwardhana’s researchers had run the compulsory gamut of not just one but two ethics review committees. With their focus on mental health issues, the team first had to conceive, analyse and list potential ethical issues that the study could throw up, and then convince the committees that they would do no harm to the people they were speaking to. And yet out in the field, new ethical dilemmas would often arise.
With this particular study for instance, researchers had a plan for what to do if they discovered a participant in the study presented an active suicide risk or had a serious mental illness, but there was always a surprise. For instance, confidentiality of the interviews was considered sacrosanct, and researchers were supposed to speak to people strictly on a one-on-one basis. But they hadn’t counted on a pattern intrinsic to social interactions in Sri Lanka. Though they would sit down with one interviewee, others would invariably butt in, and often there would even be cross-talk between various participants. Researchers couldn’t ask the third (and frequently fourth) parties to leave at the risk of offering insult, placing the team in a quandary.
Siriwardhana, currently a senior lecturer in the Public Health Faculty of Medical Science at Anglia Ruskin University but soon to take up a new post at the London School of Hygiene & Tropical Medicine, says the working with the communities themselves has always offered it’s own lessons: “What we noticed was that when collecting data, the challenges that actually came up were often very different from what we had envisaged. Being out in the field always challenged our assumptions.”
It is with this in mind that a team of researchers was awarded £417,000 from Elrha’s Research for Health in Humanitarian Crises (R2HC) programme to analyse the ethical challenges involved in health research in humanitarian crises in Afghanistan, Nepal, Lebanon, Sierra Leone, Sri Lanka and Ethiopia. The Sri Lankan-born Siriwardhana is the lead investigator and will work with his colleagues at Médecines Sans Frontières, London School of Hygiene and Tropical Medicine, Dublin City University, HealthNet TPO and other partners in relevant countries.
Siriwardhana knows this discrepancy between anticipated challenges and what researchers actually encounter during data collection is an extremely common occurrence and yet, he says, many like him have no means of sharing what they have learned. There are no real systems in place for a comprehensive review at an institutional level and no dedicated networks for researchers to catalogue the ethical challenges that present themselves during field work. This means whatever learning there may have been is wasted, as researchers often go in to a new context only to inadvertently repeat the same errors made by teams before them.
“We want to establish a mechanism that allows researchers to share information about what happens in the field,” says Siriwardhana. He sees this as particularly important for studies done in the aftermath of humanitarian crisis, when aid agencies are conducting routine data collection. Though this is not typically considered research, Siriwardhana says these rapid assessments include all sorts of evaluations, some of which could inadvertently cause harm to communities already made deeply vulnerable by the catastrophe they just suffered.
The team has chosen countries in various stages of crisis, some acute, some chronic, and some considered post-crisis and undergoing the long process of recovery. Some like Nepal and Sri Lanka are dealing with the fallout from both natural disasters and long conflicts. Siriwardhana has highlighted how critical such research is in the wake of serious natural disasters, wars that are fuelling an ongoing refugee crisis on an unprecedented scale and even in coping with global epidemics like the Ebola. “We have seen so many of these crises in recent years and there is a corresponding increase of research attention, however a focus on ethics is important to prevent exploitation of vulnerable populations affected by these crisis situations,” he said.
The R2HC programme is funded equally by the Wellcome Trust and DFID, with Elrha overseeing the programme’s execution and management. For Siriwardhana’s team, who first applied in 2014, getting this funding has been a challenge but they are now ready to get to work. They will potentially be speaking to people involved in every stage of the research, from the lead investigators of various teams, to the participants and fieldworkers as well as members of various ethics review committees. They are going in aware of the power imbalances that do exist in many of these projects, not just between participants, researchers and regulatory bodies, but in the very fabric of north-south collaborations.
However, the researchers are taking care to emphasise this is “not an exercise in pointing fingers.” Says Siriwardhana: “This is not about looking for mistakes, this is about learning lessons and sharing for future improvements.” The goal is to use established clinical audit principles and practices to improve current ethics practices. Post-study, the data and analysis will be used to create a post-research ethics analysis (PREA) tool, allowing researchers to share their experiences from the field and learn from those of others.
Once developed and tested, the English language version of the PREA tool will be made freely available for translation and adaptation for other non-humanitarian settings. It will be supported by an online site that will bring together existing and evolving ethical guidance on health research in humanitarian crises. Constantly evolving, the site will enable active information sharing on a range of ethical challenges linked to specific cultures, geographical regions, humanitarian crises types, research designs and collaborations.
Ultimately, Siriwardhana says their goal is to make a mobile application complete with videos and educational material that is available freely in different language versions. The goal is for this process to be incorporated into the ethics review process itself, implying a fundamental change in approach to health research.
“It is crazily ambitious,” admits Siriwardhana. The team are anticipating country specific challenges, but they hope that the research community will see how essential this work is. After all, their success will be determined in part by whether people at every step along the research chain are willing to ask themselves some tough questions and truly evolve in their practice. “We want to create as much discussion as possible,” says Siriwardhana.
Published in Sunday Times, Sri Lanka on 30 October, 2016. By Smriti Daniel.