Clinical trials: how we can create a patient-centric culture
The latest results of the Annual Patient-Centric Benchmark Survey (APCBS) by the Aurora Project and IPSOS MORI, find that patient confidence is at a worrying low. When asked to rank biopharma on their ability to follow a list of patient-first initiatives, patients consistently ranked biopharma companies lower than biopharma associates ranked themselves. That being said, it’s not just biopharma that needs to reconsider their patient engagement and retention metrics.
Whether it’s for Alzheimer’s studies or research on depression, a patient-centric plan is an absolute essential for clinical trials everywhere. Today, we discuss how studies big and small can inadvertently contribute to the stigma felt by patients in clinical trial culture, and what steps we can all take to ease patient worries.
For further information on the findings of the APCBS, check out our article here.
Research before research
The first step is taken in the planning, or even the pre-planning, stage. I use the phrase “pre-planning” as the data you gather here should formulate the key idea that your study looks to explore - in other words, this should be part of the ‘what’ of the study rather than the ‘how’. At its fundamental core, clinical research is about one human being helping improve the life of another; and so, when it comes to understanding what your study really is, this should be a priority.
‘Research before research’ is, therefore, essentially about doing some market research on your target audience. Before you start any serious planning, you must understand who you are doing the work for. How you understand your patient’s wants and needs is no different to how marketing execs understand the wants and needs of their consumers. In fact, we see similar differences in opinion between marketers and consumers as we do between researchers and patients.
Forrester Consulting’s 2019 Survey found that 61% of marketers rate the quality of their own data as “excellent”, yet only 26% consider their second-party data to the same degree. There seems to be an over-confidence in our own abilities that is also prevalent in the medical research industry. So, how do we level confidence across the board to build effective patient engagement and retention metrics?
The answer: go the extra mile, do the research and work out a general profile for your potential patients. Look to national consensuses and wider social surveys for general trends, with the following questions in mind:
What are their priorities in employment, family life, leisure etc.?
What forms of communication do they use regularly?
What are the lifestyle choices that inform their opinions?
This task may not be your area of expertise; that is why we recommend that your project have some form of market research sub-group as part of your initial feasibility planning (check out our advice on this particular topic here). For some, this step will sound like a basic overview of marketing strategy (and it is) - but, for many, this is a key element to research that appears to be hidden in plain sight.
The next step is something to consider when planning and during the course of the study. This is not only about making sure information on the study is as clear as possible (if you need any help with this, we recommend looking at our guide on the topic). It is also ensuring that patients can easily access treatments on offer, especially if you are operating on a located site.
If you are providing patients with a set of directions in order to access your site, please ensure that they are as simple as they can be. If this is not possible, we recommend hiring patient-care staff that can act as guides for candidates as they arrive; ultimately, alleviating the unnecessary and highly-common stress of arrival. Equally, we recommend that some form of waiting area or lounge is available on located sites that act as means of calming the patient before their consultation. Provide the latest reading materials and entertainment to avoid connotations of the clinical. It’s all about keeping patients comfortable and thus the patient has to be considered in every sense of the study’s implications.
Keep patients informed
It’s so easy for researchers today to think that the patient is no longer involved after they have been admitted from their after-care program, when the researcher has gathered all the data they need from them. What we need to remember is this: part of doing a good deed is also about knowing where all your effort is going. Patients want to know what their own efforts have achieved, and it’s the researcher’s responsibility to keep them informed.
If not only out of courtesy for the patients wants, keeping candidates informed beyond the study’s lifetime also encourages participation in future projects. At the end of the day, people aren’t going to be too fussed to participate in something that seemed to have no effect/appears pointless in hindsight the first time around. This is why sending monthly updates that contextualises what their contribution has added to the field of study is an excellent way to keep patients involved and engaged.
Here at Citruslabs, we've created the ideal patient recruitment dashboard to help any researcher improve their current metrics. With over 3 million patients on record, we ensure researchers are connected to a thoroughly educated and engaged pool of participants; so, it is no wonder why we have such high patient confidence! Linked directly with our #1 health app in 17 countries, Mindmate, our patient-recruitment dashboard provides researchers access to our patient database via an easy-to-use interface that is guaranteed to streamline any clinical trial.