When I talk to people about diversity, equity, and inclusion in the context of clinical research, I am usually met with one of two questions:
- How do we do it?
- How do we know we’re doing it well?
In this post, I’m going to focus on the answer to the second of those questions, which sounds straightforward, but very much isn’t. Today, I’m talking about Goals.
Why your diversity goals aren’t working
Diversity goals are often ambiguous. The concept of ensuring the population of a trial is diverse is a vague task, so the goal becomes vague, too. To show you what I mean by that, I’ve listed two examples of diversity goals I’ve heard before, and the questions I have asked in response.
Planning for effective diversity goals
The questions I had after hearing those goals could have been answered if the goals were clear and well structured. You may be familiar with the SMART goal-setting process, and I suggest going back to basics and crafting diversity goals with this approach in mind.
- Specific
Be more specific than you think you need to be: do you mean diversity, or are you thinking about inclusivity or representation? Sometimes, it’s more helpful to think about which groups have been underserved, and then focus efforts on designing a trial that explicitly serves one or two of them. This approach has the potential to yield faster progress in making health equitable than working to enrol a patient population that includes everyone. - Measurable
Measurement is going to be difficult because humans are complex things. We are multitudes, and measuring aspects of our identity makes it highly likely that other aspects will be overlooked. Accept that there will be limitations, and you will have a much easier time getting this right. At the trial design stage, plan how to collect data relevant to your patient population, consider who that data collection process may involve, and think carefully about when it must happen. - Achievable
It’s all well and good to aim for a trial that will change the world, but if you don’t have the budget, time, or geographic location to support your goal, you’re really going to struggle. That’s not to say that you shouldn’t aim high, but aiming too high will likely negatively impact your trial team’s morale. Be realistic about what you can do within the context of the time, and endeavour to do it well. - Relevant
In many cases, diversity is seen as one goal everyone should aim for. That is not the case. The clinical area that your trial sits within is not only relevant but also crucial. The STRIDE project, the academic project I worked on before I joined COUCH Health, offers a useful starting point. When trying to work out what you should be aiming for in terms of the ethnic groups that should be included in your trial, use data on prevalence, severity, and progression to understand who stands to benefit most from the results of your trial. - Time-bound
Your goal acts as the endpoint on your timeline – once you’ve got *there*, you’ll have met your goal. You could stop there and get to work, but you would be doing yourself a disservice. Set out your trial recruitment timeline, put the goal at the end, and then split the timeline equally into chunks. These are checkpoints that allow you to assess how things are going. Though the number of chunks broadly depends on the length of your timeline, you also need to view them as change points that allow you enough time to re-think your approach and still meet that final goal.
Surely there’s an easier way?
At the beginning of this post, I introduced the question, ‘How do we know we’re doing it well?’. I said it wasn’t straightforward, and I hope this post has reinforced that. No magic wand will tell you if you’re doing good work. It takes time and effort to measure the impact of equity-related work, just like it takes time and effort to do it.
There are no standardised metrics or measurement approaches to evaluating diversity, equity, and inclusion in clinical research, and while that may be frustrating, I think it’s probably a good thing. So often, we look for a quick win, something we can tick off our list to allow us to move on to the next thing. Health research equity is not a quick win. Instead, we must carefully think through our approach, consider the potential impact on patients, go back to the drawing board and shake out any nig
