When we talk about the future of clinical research, we often focus on protocols, endpoints, recruitment, and data. Patient advocate Carole Scrafton reminds us that research is strongest when more voices are actively included.
“Advocacy started for me as a child”, shares Carole.
After losing her dad to bowel cancer at the age of 10, Carole has been motivated to support research from a young age. Years later, after battling prolonged pain herself, Carole turned this drive into action, leading her to build communities and speak out.
“I had chronic pain my whole life and couldn’t get a diagnosis. When I was thirty-nine, I eventually got diagnosed with a genetic connective tissue disorder called Benign Joint Hypermobility Syndrome, along with Fibromyalgia.”
Carole’s patient journey led her to found ‘FibroFlutters’ initially for fibromyalgia and then developed it to focus on chronic illnesses. Later ‘ZebraStrutters’ was created for rare diseases. These networks provide signposting for resources and communities for people across the globe, helping to spread knowledge and raise awareness.
Patients Are More than Diagnoses
“Anyone with complex health is either going to be seen as an outlier or someone who could provide a lot in a variety of different ways, it really depends on who is doing the research,” explains Carole.
For patients like Carole, it isn’t just about one illness, it’s about managing many. She stresses that this is often overlooked in research design and that a more holistic design should be embraced focussing on a patient’s complete health experience, accessibility needs, and daily life.
She points out that the pandemic showed us trials and care can be flexible, decentralised and adaptive, so why not build on that for patients whose lives don’t fit into standard trial boxes?
Research as a Connected System
Carole believes that it’s not just patient voices that hold value in clinical research.
Listening to everyone’s needs benefits everyone. It’s not just about the patients, but also the other key stakeholders such as lab techs and nurses. Everyone along the pathway has needs and insights.
This broader view opens up possibilities and helps identify bottlenecks. What if nurses needed a simple flyer to communicate information? What if lab staff gave input on sample-collection timing to minimise patient burden? What if transport services helped design trials that reach isolated patients?
Carole suggests simple, engagement tools such as surveys, forums, and databases to encourage consistent communication for everyone involved. Small changes can prevent barriers, and she emphasises that prevention should be a big focus.
“If you are looking for the best outcome, surely you’d be looking to have the best outcome for everyone to create the best outcome for the patient,” she states.
What We Can Learn: Research Built on Shared Voices
Carole’s journey and advocacy offer some major focus points for designing better and more inclusive research:
- Incorporate all voices from the start – include patients, nurses, lab staff and all involved in delivering care or supporting research
- Recognise expertise from all stakeholders – value professional expertise along with lived experience
- Design for real lives – account for comorbidities, physical barriers and fluctuating health of patients
- Prevent barriers through connected systems and clear communication – use simple tools and early engagement to identify bottlenecks and reduce burdens for all
Simple shifts to include all voices benefit not just the patient, but all involved and the overall effectiveness of the trial.
It’s not just patients that need to be heard! Patients aren’t just patients either. They also have a multitude of skills and a lot of knowledge that can be utilised, as well as the insight they can provide on their disease.
The Future of Research
What Carole has created with Flutters and Strutters shows the power of communities amplifying patient voices to share their lived experiences that drives forward patient-led advocacy.
Carole promotes involving different multi-stakeholders from the onset. Stakeholders such as researchers; health care professionals; care providers; patients; and support staff such as those who are involved at any point along the process. She believes this type of approach bolsters a more efficient and improved collaborative trial design.
This approach could help ensure that outcomes reflect real-world needs and challenges and better suit the needs of the patient.
Written by
Eloise Healey