Approximately 2.5 months from inception to execution, a veritable cornucopia of Australia’s thought leaders on topics such as consent, voluntary assisted dying (VAD), AI in healthcare, ethical aspects of research involving Indigenous people combined to make a three day phenomenon and one which all attendees will remember. This memory will not simply be for the quality of the talks (its hard to say Wow! too many times in relation to Brent Richards’ talk on AI or Maree Toombs’ talk with 3 case studies illustrating how to do research with Indigenous people). The memory may also be because the format of the conference, which was online, free to attend, and with spaced out sessions to facilitate completion of work-related tasks, was novel and hopefully beneficial.
As part of the formal opening of the conference, there was a celebration and acknowledgement of the contribution made to human research ethics in Australasia by Colin Thomson AM. Even though he had made the difficult decision to retire, after many decades of service, his sage, patient and generous wisdom had shaped the careers/development of many (including most of the speakers at the conference) and the evolution of the National Statement. His selfless contribution will continue to be treasured for many more decades.
In at least one way, this meeting was phenomenal. Enabled by an absence of relevant ethical conferences this year, with the cancellation of the Australasian Ethics Network (AEN) conference and the Australasian Association of Bioethics and Health Law (AABHL), the meeting filled a gap in the training of HREC members and their access to contemporary information about topics that they consider in every application. Indeed, one of the themes that may have emerged was the need to consider not just the guidelines used to make decisions, but instead to put this in the context of the overall perceived good of the research study – a teleological rather than deontological approach, if you will. More simply put, find reasons to approve rather than to find fault. This in itself is a worthy goal, and one that should perhaps form the perspective of HRECs.
The meeting was phenomenal in a second way. It was organised largely by two people and run by those same two people on the Zoom platform. Although there were a few minor hiccoughs including a dodgy Spotify playlist in the breaks, this event showed that the need to pay exorbitant fees to hotels or venues to host conferences (including the time of sound/ AV technicians) should be firmly in the past. This year has taught all in academia how to use platforms such as Teams or Zoom, so the extension of these platforms to host a conference, which attracted 800 registrants from Australia and a few from the US and New Zealand, should not have come as any surprise. However, what was surprising was the ease with which it could be hosted and coordinated, even when the scheduling of concurrent sessions was required.
Of course, running any event requires some commitment from backers, and in this case, the event was financially supported by Brisbane Diamantina Health Partners, and supported by Metro North Hospital and Health Service, Queensland Health, Australasian Human Research Ethics Consultancy Services and Salinger Privacy. The absence of a registration fee was a deliberate decision, and though it is tempting to speculate that charging a small fee may have resulted in all registrants being online at any one time (500 was the maximum number), there appeared no justification for a levy, especially because at this time, no organisation exists that could use the funds, and again, there was very little in the way of overheads.
Had this been a face to face event, such as the last AEN and AABHL meetings in 2018, it is likely that it would have attracted perhaps 200 attendees. However, the cost of attendance, including flights and accommodation, would have been prohibitive, and would have meant that very few of the HREC members, at which the meeting was aimed, could have attended. Witness instead, attendees from every State and Territory in Australia. With demographics being collected for a privacy session conducted by Andrea Calleia from Salinger Privacy, more than 320 members attended. This in itself is good reason to change the paradigm.
From Day 1…
It is hard to quantify the benefit that listening to a talk can provide, even with feedback forms, as that benefit can be less tangible unless contextualised. This then, was the approach with day 1. From the first talk by Ian Freckelton on modern judicial approaches to consent, then reinforced by Ian Olver’s opt out approaches to consent, Tanya Symons simplifying consent processes for low risk clinical trials and Nik Zeps’ experiences of e-consent, Australia has a suite of tools in its tool box to develop policy that can be world’s best practice in relation to this topic. Kristi Geddes’ reminder about the need to ensure that Guardianship legislation is complied with, especially in emergency situations, was a useful aide memoire, especially because all States and Territories have differing legislation.
Wider horizons in Day 2
With day 1 out of the way, and a realisation that the platform was virtually fool proof, the issues of horizon scanning topics of VAD, genetics and genomics, and AI in healthcare led off day 2. The talks did not disappoint. Ben White, Ingrid Winship and Brent Richards respectively opened all of our eyes and minds to topics that not only are not far from affecting all decisions made by HRECs , but which are bearing down on us at a rate of knots. It was startling that the use and analysis of existing data can have such a profound effect on the development of models for healthcare such that there would appear in many cases no need to collect new data where such data already exists. This talk stood out not simply because of the imagery and quality of the presentation, but because of the implications for healthcare and for HRECs. We are constantly asked to approve what may sometimes amount to fishing expeditions for data. This talk ably demonstrated that there may be no need to continue to seek such data and as such no need to approve its collection.
A session on integrity in research by a high-powered and influential panel, which included the Queensland Integrity Commissioner and the Chairman of the Crime and Corruption Commission, conducted partly among them as a question and answer session, was a novel and refreshing adjunct to the usual diet of PowerPoints, albeit with excellent talks to match. Integrity in research remains a goal of all research institutions and examples of where things have gone wrong were educational. David Lavelle, representing UQ, was particularly enlightening as to the effect that such malfeasances can have on a University. Overall, it was a well-crafted session, and a salutary reminder of the need to engender a culture of co-operation rather than blame and compliance.
The session on contemporary HREC practices occasioned a presentation by Lindsey MacDonald from the University of Canterbury, Christchurch NZ. The second general theme of the conference was that when conducting research, whether it be with First Nations peoples or any particular community group, the appropriate input from that group is required. This may come as a surprise to many HRECs but the question remains as to whether a HREC is appropriately placed to make a judgment on whether the proposed research will meet the needs of the community for which it is being conducted. It seems axiomatic that the group best placed to provide this view is the community itself. It cannot be long before hospitals and other institutions establish specific community groups to provide this input. This point was reinforced in a talk by the author, who contended that the way forward for ethics review, research governance and research design was in a structured, though possibly virtual paradigm that included such components as community input. He advised that a pilot of such an approach was underway.
This conference may have been notable for the absence of input from the keepers of the National Statement, the National Health and Medical Research Council. This was deliberate as it did not appear to be a good use of time to tell the audience what the consultation, on which many had recently commented, was established to achieve. Instead, Gary Allen provided a consumer perspective, which again reaffirmed the need for community input, but also discussed some of the implications of changes to the National Statement Chapter 4. It is notable that the proposed changes, while they may ‘democratise’ the consideration of research involving participants who may be vulnerable, do not realistically make the role of a HREC clearer or simpler in this regard. Instead, as affirmed by Gary, there needs to be the appropriate input from the appropriate group, a conclusion that many have already come to.
Day 3 – good things come in threes
Possibly the best talk (just the author’s view) of the conference was that given by Maree Toombs. Maree never disappoints and showed that research with First Nations Peoples can achieve the respect that is required by using a common-sense approach. Her story about the bus in a remote town and eventual acceptance by Elders of the town was a salutary lesson in a simple approach that did not overplay the interplay between research and the Indigenous Community. It was a talk that clarified and informed. What a great speaker!
Allowing HREC members to give both inspiring and informative talks seemed to be a good way of democratising (apologies for using this word again) the conference. How better to get a message across than by it coming from those who assess applications providing their views on issues that exercise them. Thus, talks on human rights, qualitative research, methodological assessment, cultural norms, biobanks and others provided variety, and excellent information but in a way that maintained the ethos of short sessions with decent breaks. I hope that others found this format useful. I guess I won’t know until I get the feedback.
Last but not least
The final session pitted the wisdom of 6 HREC chairs against some big questions that went from retrospective approvals, the remit of HRECs, to how they can add value. All significant questions. The six panellists were able to provide great insights over the 60 minutes and largely answered all questions with consensus if not unanimity. Some things to consider are how best to engender quality in HREC decision-making, a topic never appropriately addressed, but one which, with some consideration and reflection, could become an integral part of every HREC.
It is not unexpected that one would wish to regale readers with the quality of an event, especially one organised by the author. This is not done with this in mind. More so, it serves to highlight how an event that included speakers of inestimable quality could be run on a platform that has all but negated costs to participants. As a paradigm, it is difficult to overestimate its benefit. From small conferences to extremely large ones, this could serve as a model. It is true, however, that the power of human interaction is nullified as there is little ability for attendees to interact with presenters other than through the medium of the chair or host. Still, this is a small price to pay when the price is nothing at all. This could either be the democratisation or socialisation of the information age.
Finally, taking a health economic perspective, if the costs of each attendee saved was around $1000, and say 50% of the attendees were hospital HREC members who would otherwise have had to be supported by their hospital, using public funds, this has then saved around $400,000, which can be applied to other purposes. Don’t try and say that this was not a valuable exercise.
The author is the chairperson of the RBWH HREC, UQ HREC ‘A’, and a member of the Townsville Hospital HREC.
 Such as the University Research Ethics Manual (UREM) and the network of collegiate Research Ethics Advisers.
This post may be cited as:
McGurk, G. (29 November 2020) If you build it, they will come- 2020 Human Research Ethics Committee (HREC) Training Conference (online) 18-20 Nov. Research Ethics Monthly. Retrieved from: https://ahrecs.com/if-you-build-it-they-will-come-2020-human-research-ethics-committee-hrec-training-conference-online-18-20-nov/