Recently, our team joined colleagues, clients, and partners at the International Society for Quality of Life Research (ISOQOL)’s 30th Annual Conference in Calgary, Canada. This year’s conference focused on identifying the many barriers that limit the use of PROs in day-to-day patient care and formulating practical solutions to overcome those barriers.
Each year, our team comes away from the event educated and inspired, with key takeaways we are ready to discuss with our clients and incorporate into our life sciences collaborations. Our Clinical Outcome Assessment (COA) team has extensive experience translating and optimizing patient-reported outcomes (PROs), and we’re always eager to see how the industry is shifting and how we can play a part in improving both the utility of PROs for our clients and the experience of completing PROs for clinical trial participants.
This year, our team had three primary takeaways from the event for organizations creating, translating, and working with PROs.
1. Consider tone
When creating PROs, a few qualities come to mind as inherently important: accuracy, clarity, and precision. One quality that may ultimately be just as important may go overlooked: the tone of the instrument.
Phrasing instructions and questions in a positive manner vs. a negative one can have an impact on both the response and the experience for patients completing the assessment. We’re mindful of not just what we say, but how we say it when consulting on and translating PROs.
2. Adopt a comprehensive definition of inclusivity
As trial sponsors make increasing strides toward patient-centricity, they stress the commensurate importance of creating inclusive assessment measures. One takeaway from this year’s event was ensuring that sponsors are working from a comprehensive understanding of what it means to be inclusive.
Inclusivity means sensitivity and consideration of all patients, especially those historically excluded due to age, race, sexuality, gender, ability, and/or socioeconomic status. It also means consideration of people with specific diseases and conditions. For example, will a certain PRO or ePRO be appropriate for people with dyslexia? Will it work for people with physical or cognitive impairments? Will older people be able to navigate a digital platform? These are the types of questions organizations must ask if they want to reach a point of true, comprehensive inclusivity that will provide robust and representative data.
3. Communicate the “why”
The theme of this year’s event was “relevance”—and we believe that extends to patients, too. Patients completing assessments need to understand why they’re answering certain questions. Because COAs collect data related to a patient’s quality of life, the questions may sometimes directly—even painfully—probe the most unpleasant areas of life with their illness. This can be off-putting and difficult to prioritize. However, when patients understand the relevance behind a COA instrument--that the questions are designed to measure what matters to them--it reinforces the partnership that exists, or should exist, between trial sponsor and trial participant, and which ideally serves the goal of improving health outcomes.
Staying relevant in 2024
The ISOQOL Annual Conference is one of our favorite events, and it’s a recurring opportunity for our team to meet with like-minded peers and focus on the importance of the life sciences work we do. RWS knows how relevant this work is to patients and people all over the world, and we look forward to continuing our commitment to supporting best practices in clinical outcomes assessments.
To learn more about the work we do in the COA and clinical space, reach out to our team today.