The Patients as Partners EU Conference, put on by The Conference Forum, took place at the end of last month in London. A diverse group met to collaborate and discuss the importance of patient engagement in drug development, research, and charitable foundation as well as the challenges associated with implementing patient voices in meaningful ways.
Key elements of what it truly means to be “patient centric” were outlined. As Alastair Kent, Director of Genetic Alliance UK, said, “If you don’t have a definition for where you want to be, how do you know if you’re moving forward or moving round and round?”
Several organizations, both for-profit pharma companies, and charitable foundations, presented case studies to show what they have learned, and how they’ve progressed, as well as the hurdles which must be overcome.
“The priority needs to be the patient. Without patients we don’t have clinical trials in the first place.” -Sarah Deeley, Clinical Country Lead UK & Ireland, Global Clinical Operations, Biogen Idec
More than once, it was asserted that patient centricity is beneficial to patients, to the advancement of research and drug development, and to industry.
“Not only is patient engagement the right thing to do, it’s beneficial for everybody, industry and patients. It has a positive impact on all stakeholders.” -Nicholas Brooke, CEO, PFMD
The elements considered necessary for a more patient centric system were varied.
One recurrent topic was the burdens that are inadvertently placed on patients by large research/development companies, and how those could be reduced. Some conclusions were quite simple:
- Provide transportation services to clinical trial sites.
- Provide easy to understand information.
- Coordinate with patient schedules.
- Implement digital tools to make participation in studies and trials more accessible.
In addition to reducing or eliminating patient burdens, more needs to change for patients to be partners rather than subjects in studies.
“The educated patients is a resource, and a resource is something you respect. Resources are also independent, not a marketing tool for pharmaceutical companies.” -David Haerry, EATG
- Patients need to be brought into the drug development process sooner.
- Consider patient networks, caregivers and families.
“People with diseases weren’t put on this planet to give professionals interesting things to do. Pharma needs to form things to fit our lives, rather than expecting us to fit their protocols, we have other things to do with our lives.” – Alastair Kent
- Listen to patients. Patient feedback should not be gathered for the sake of gathering it alone. Show how patient feedback has been implemented/taken into account.
“We try to take a holistic approach, is everyone getting something out of it? If not why not? We send materials to patients for review, 50% of commentary influenced final documents, and that feedback is sent back to patients.” – Nathalie Bere, Patient Relations Coordinator, European Medicines Agency (EMA)
Patients also want to know what type of impact they have had. If they are providing their feedback, their time, their bodies, to contribute to the advancement of change in the industry they want to know that it was meaningful, and how.
“Some patients do not hear back, and feel lost and unsure of the impact of their participation. We cannot just conduct an advisory board and then not continue engagement with the community.”- Annick Anderson , Director, Research Service, CISCRP
- Patient communities differ from one another in crucial ways. Clinical trials should be as specific to a particular community as possible.
“It’s not one size fits all, it’s a vast industry, cater to specific patient populations.” – Sarah Deeley
Engaging patients in these ways will benefit patients and pharmaceutical companies alike.
Pharmaceutical and biotech companies can gain understanding of what outcomes are meaningful for that patient community as they design their studies and will get an idea of what types of research patients will be willing to participate in for the full duration of the study.
“Better informed patients are more compliant patients. Informing patients better leads to more retention.” -Caroline Forkin, Senior Director Medical Affairs of FIRECREST,ICON
“Patient engagement has to be holistic and strategic. Involve patients early, and involve them throughout the process. We have to move patient engagement from tick box exercises to a mutually beneficial collaboration.” – Irmi Gallmeier, F. Hoffman La Roch