To create useful and useable technology solutions to support patients in clinical trials, it’s important to seek out and respond to real-life patient needs. At Longboat’s most recent patient focus group in London, we wanted to get the clinical trial patient perspective on:
- How they found out about their clinical trial
- How well information was communicated before, during, and after participation
- What technology tools, if any, were provided to support them on their clinical trial journey
- How they stayed protocol compliant and achieved their clinical visit schedule as well as remembering all key elements required
- Whether they felt well prepared on what would happen during each study visit
- What areas of taking part were most challenging
- Whether they felt appreciated for giving up their time, and if they were informed about the results of their study
When asked how they thought a better patient experience could be achieved, here are 7 things they told us:
1. Engage and empower patients from the beginning.
- “There needs to be a sense that you are part of something bigger - that you are part of a committed cohort. Being made to feel part of a team is really important.”
- “Empower patients to ensure they know and feel that they are making a difference. It’s important the patient knows that they are not just a number.”
- “Patients need to feel that everything they do makes a difference because every action they take on the trial matters for the overall data collected in the study.”
- “Patients put so much into it, they want to stay involved and know what’s going on. Things like a regular newsletter can be a useful vehicle for that.”
2. Research training should become part of nurse and doctor training and medical professionals should be educated and aware of ongoing clinical research trials so that they can tell the patient about potentially suitable trials at the time it matters most for the patient.
- “Often some GPs and consultants themselves are not aware of clinical trials that may be relevant for their patients.”
- “People need to be educated so that if a good trial is available that might help, a patient can hear about it.”
3. Take time to understand the patient perspective.
- “If the patient perspective was introduced as a study objective, the research team could use information on patient preferences as a tool to better understand patient expectations.”
- “It’s important to understand how patients feel about being involved in research, what they know about the study, and what they need to know about the study before they agree to take part.”
- “Misalignment between actual patient experience and expectations can adversely affect the patient’s long-term commitment.”
4. Maintain regular contact between the patient and clinic staff and give patients more information on the progress of the trial on an ongoing basis.
- “There should be regular contact between the volunteer and clinic staff.”
- “Make sure to maintain a connection throughout the trial and give the patient confidence that the information they need will be readily available to them.”
- “There should be regular contact between the volunteer and the clinical trial staff. Make sure to maintain a connection throughout the trial and give the patient confidence that the information they need will be readily available to them.”
- “I got information letters during my participation but would have like to have received text messages.”
- “I didn’t feel well informed and was only updated occasionally through conversations in person with the doctor/or nurse during clinical visits.”
5. Reduce the burden of trials by making supporting technology available.
- “There’s so much technology available these days that can reduce the burden of trials on patients and their caregivers. This should be made available wherever possible.“
- “Information about the trial should be made more accessible. Progress reports and end results should be clearly communicated.”
- "I wasn’t able to access information in a web-based or mobile format and I would have liked that option.”
6. Share the end of study results clearly and transparently.
- “I would have liked to have known if I had received placebo or not and what was learned from the study, especially the outcome. I would also have liked access to my medical and hospital notes throughout.”
- “I would’ve liked to have known how my particular results compared with the overall study results and had someone explain and go through them with me. I had to ask for the results myself, they weren’t offered to me!”
7. Make sure the patient feels appreciated from start to finish.
- “I felt appreciated throughout the study but especially at the beginning.”
- “I was thanked in person by the clinic staff at every visit.”
Next time, we’ll explore more of the patient feedback and present a ‘Patient Wish List’.