Engaging Patients in Research
Web-based portals, social media, and connected devices offer an opportunity to make clinical trials more patient-centric.
In a recent eyeforpharma webinar "Leverage web-based portals, social media and connected devices for more efficient clinical trials", experts from Eli Lilly, PatientPower & PatientsLikeMe shared their experiences with these technologies.
Clinical trials depend on participants, but the industry has been reluctant to give patients a voice in the drug development process. Few companies currently seek direct feedback from patients, focusing instead on other sources of information. It’s not common to engage patients in the protocol design, but experts in that space do agree that it’s an important thing to do. “Getting feedback from patients can diminish the number of mistakes that surface during the trials, and the number of corrections you need to make,” said Jeremy Gilbert, VP Product and Strategy, PatientsLikeMe.
How to Seek Protocol Feedback
PatientsLikeMe have experience in gathering feedback from people suffering from various medical conditions. Most recently, they cooperated with Genentech, who were interested in sourcing patient input on a procedure (lumbar puncture) they were considering adding to the trial protocol. Not sure how the inclusion of a lumbar puncture would affect patient attitudes and willingness to participate in the study, Genentech asked PatientsLikeMe to break down the key aspects of the trial to understand what patients thought about different issues in isolation. Four-hundred patients were surveyed, and data was rigorously analyzed. The result of the study was a set of qualitative and quantitative insights, which enabled Genetech to redesign their protocol. “They could go in with their eyes open about what issues might come up and they were able to address them before they surfaced,” Gilbert explained. The project results have been published in the journal Clinical Researcher.
When seeking feedback from patients, it is important to understand that you can’t ask for generic information. A growing body of literature has demonstrated that what patients need from a clinical trial differs between people, and between conditions, so achieving true patient centricity requires an individualized approach. “You need to have defined your target population very clearly. We just commissioned a 5000-member study of the patients in our network who have participated or were thinking about participating in a study. We want to use the results to explore what drives different patients to participate in this particular trial over other studies,” Gilbert summed up.
PatientPower is a platform, which connects thousands of patients around the world, enabling them to share information about their conditions, but also providing reliable expert information that might be otherwise difficult to acquire. For example, there are live-stream talks delivered by consultants from across the world in their local languages, and patients are encouraged to submit their own questions during the broadcast. Information about clinical trials is embedded in the educational materials provided by PatientPower, although pharma have no editorial input.
There is a big need for a service like this, as the amount of information available and the pace of progress in science often mean that people struggling with illnesses are confused about what course of action is best for them. Andrew Schorr, Cancer Survivor & Founder, PatientPower, spoke at the webinar about pros and cons of trial participation from the patient perspective. He stressed throughout that pharma need to engage patients before, during, and after the trial.
“Patients need to be involved early, and communication must be on-going,” Schorr said, adding that although information sharing has shifted to smartphone approaches, the focus shouldn’t be on technology. “Pharma need to understand the need for knowledge and consensus within the family and the care team. If you don’t facilitate and support patients early, they won’t participate. I believe that if they understood the science behind the trials, they would enroll.”
Robert Kroes, Project Lead Clinical Open Innovation Europe, Eli Lilly, spoke about pharma’s efforts to engage patients in clinical research. He pointed out that currently pharma focus their efforts on the recruitment stage, but fail to follow-up. “If the industry respects people and believes in educating patients, they need to make trial results available to patients in plain English.”
Eli Lilly is investing to become a frontrunner in patient engagement. Kroes named a number of initiatives that the company is championing, including qualitative, multi-country study aimed at identifying what prevents people from enrolling in research, and a lab simulator, where people could experience what it would be like to participate in a study. In addition to these projects, Eli Lilly also run blogs about clinical trials, and is building a website, which will feature study results written up in a way that is accessible to anyone without science background. The company is also creating a portal, which will allow patients to search for clinical trials.
The portal, developed in cooperation with Novartis and Pfizer, pools information from clinicaltrials.gov, but is user-friendly and allows the search for studies within a defined distance. “The portal is free to use. In the future, we will add other tools, like questionnaires, that will improve the likelihood of a person finding the right trial. We’re in the process of gathering feedback from patients to understand if we’re on the right track,” Kroes said.
Clinical trials are crucial to pharma’s existence, and patient engagement is key to success of research. The eyeforpharma webinar offered examples of solutions that have the potential to make trials patient-centric, but more initiatives need to be launched to ensure solid partnership with patients.
This webinar took place in conjunction with the Patient Centric Clinical Trials Europe conference and exhibition, taking place in London on June 8-9, 2015.
Speakers include senior executives from Sanofi, Amgen, GSK, LEO Pharma, Eli Lilly and many more.
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