What Factors Should You Take into Account when Designing ePROs - Electronic Patient Reported Outcomes Solutions?
Patient-reported outcomes (PROs) have become increasingly integral in healthcare for assessing the effectiveness of treatments from the patient's perspective. What should you consider when gathering patient feedback?
So, how can you design useful electronic solutions for patient-reported outcomes? Hear from Mustafa Ali Syed, Researcher at the Manchester Academic Health Science Centre, The University of Manchester, and Ben James, Co-founder/Chief Design Officer at uMotif - ePRO, an engagement platform designed to power clinical and real-world research. Both are co-authors of a recently published paper titled Exploring the Cross-cultural Acceptability of Digital Tools for Pain Self-reporting.
There has been a growing emphasis by regulatory bodies and research institutions on the importance of PROs in clinical trials and drug approval processes. PROs are increasingly being used to assess the impact of new treatments on patients' quality of life, functional status, and overall satisfaction with care. This shift reflects a broader move towards patient-centered care, where the efficacy of treatments is judged not only by clinical outcomes but also by their impact on patients' daily lives and well-being.
There has been significant advancement in the integration of technology with PROs. Wearables, mobile apps, and digital health platforms are now commonplace, allowing for real-time, continuous collection of patient data.
3 things to keep in mind in design of digital solutions:
Encourage patient engagement by creating digital tools that reflect the users' identities and experiences.
Employ advanced analytics to understand variations in symptom reporting across different populations.
Strive for inclusivity and trust-building when introducing digital technologies into healthcare, with a focus on engaging underserved communities.
Don’t Forget about Bias
The interaction between patients and healthcare providers shapes patient perceptions. For example, if a patient's reported pain level is ignored during a visit, they might exaggerate in future visits to be taken seriously, leading to provider bias and potentially incorrect treatment. Advancements in healthcare technology present a significant opportunity here. By continuously collecting health data over time, these technologies enable a more accurate, long-term view of a patient's condition, rather than a one-time snapshot. This approach can lead to better-informed decisions and improved patient care, shifting from a momentary to a comprehensive understanding of health issues.
Listen!
In addressing the development of tools and technologies for specific communities, it is crucial to maintain an open and inclusive approach, said This involves actively engaging with these communities, not with preconceived notions of what might work best for them based on our perspectives, but by genuinely asking how they wish to be supported.
Often, when interacting with these groups, a recurring theme emerges: they feel unheard. By prioritizing listening and understanding their needs, we can develop technologies and tools that are truly beneficial for them, rather than driven by our own objectives or gains, says Mustafa Ali Syed, Researcher at the Manchester Academic Health Science Centre, The University of Manchester.
Show notes:
00:00:00 Why Do PROs Matter?
00:04:00 Evolution of Data Collection
00:06:00 Importance of Diversity in Clinical Trials
00:08:00 Ethnicity, Culture, and Pain Perception
00:12:00 The Role of Technology in PROs
00:14:00 Designing Inclusive Digital Solutions
00:20:00 Challenges in Engaging Targeted Populations
00:22:00 Language and Communication Barriers
00:26:00 The Future of PRO Research