Today we are sitting and reflecting on the Thinktank we held a year ago today to discuss the issues people have finding clinical trials and possible solutions.
Finding clinical trials is hard for patients. In fact, it is pretty hard for anyone, even if you think you know where to look. And on the flip side, finding participants for clinical trials is often also hard.
The problem of clinical trial recruitment is complicated. Reasons range from the scarcity of patients, unrealistic eligibility criteria, poor outreach, the research isn’t something people are interested in, protocols are burdensome or there is a financial headache to participate, site are disinterested or under-resourced , clinicians don’t know they exist to refer, and more. This recruitment problem has led to lots of companies spruking clinical trial recruitment services and solutions (including, dare we say, Research4Me). Organisations are investing in advertising, recrutiment support, data mining and analytics, machine learning, AI, …. anything that might work to delays and trial failures that occur due to poor recruitment. It’s all activity which might be very interesting, and might even work, but can be very expensive, contributing to the increased cost of research, development and ultimately the price people (and governments/insurers) pay for new innovations and treatments.
So we sit and ask ourselves, why aren’t we doing more to get the inexpensive basics right, fixing the low hanging fruit, like making it easy for patients to find trials via the clinical trial registers?
Publicly funded clinical trial registers are a really obvious place to make available accurate, complete, current information about the trials being conducted, in language that is accessible to those that might be looking for solutions – the patients. Yes, trial registers were originally created to increase transparency about the research being done, to avoid duplication in research effort, so were scientifically orientated. But now, empowered by knowledge and technology, patients are increasingly using trial registers to find trials themsleves and these registers are failing them miserably. Not only because of the quality of information on the registers, but because of the variability of search algorithms that mean even if a trial is on the register, you may not find it if you have used the wrong search terms. Poor quality information in, poor quality information out. Trial registers can’t fulfill their remit of providing transparency if trial sponsors don’t keep registers accurate, complete or up to date.
Last year, in response to frustration expressed to us by patients, we ran a ThinkTank to explore the challenges patients have finding trials, researcher and industry
perpectives on completing registers, registry perspectives on the challenge of getting good data, and potential solutions. We released a report from that meeting with a number of recommendations to help patients find trials easier. We continue to advocate for and work on these solutions, with a view to 1. helping patients find trials and, 2. as a consequence, help address recruitment issues and speed up research.
As the one year anniversary of the Thinktank, it seems an appropriate time to revisit this topic, and share our ongoing frustration with helping make information about trial recruiting in Australia accessible. People ask us… “Why don’t you have a trial search tool on your website?” Well, our simple answer is, we would have IF we believe there was good, comprehensive (all trials), current information available from the register to enable one. So, for the moment, we share the places people can look on our FIND TRIALS page, and continue to provide a manually created list of trials recruiting each time we send out our newsletter. This list is created by a very manual process, but is part of our commitment to increasing awareness of the board types of research projects looking for participants.
And here is why we know the data is not current. When we search the register, we search for trials with a status of ‘recruiting’ and with a trial start date since the previous search date. And on average, we are find about 10-20 trials per month newly recruiting. Here’s the problem. In Australia, statistics inform us that about 1000 trials start each year in Australia. So our search should be finding 80-100 trials per month, give or take, which is a long way short of what we are finding on the register.
Completely frustrated, we spoke to the ANZCTR team recently about this discrepancy, looking for an answer. Was it the way the search algorithm worked, the search terms we are using, or the currency of data. With a bit of a look, it appears the likely culprit is currency of information – researchers aren’t alsways updating the register when they start recruiting, or it would seem, when recruitment closes. If you look at our experience, you might suggest as many as 80% aren’t keeping the register current.
So imagine you are a patient looking for options…
So, in line with our recommendations from the Think Tank, we would once again like to send a call to action to all trial sponsors and researchers using the ANZCTR: Please keep the register current. Quite frankly, this is the easy, low-hanging fruit, for trial recruitment, especially when so many recruitment solutions are using the information from trial registers to help inform and match patients to trials.
People can’t know about trials you don’t tell them are recruiting. Sure, there is still the issue of awareness of clinical trials to address, but once people are aware and go looking, you want them to be able to find your trial.
Update clinical trial registers – make them a useful resource for patients, not just a tick box for journal editors and compliance with the National Statement (section 3.1.7).
