Most clinical research professionals would probably agree that patient-centricity should be central to clinical trials however in practice it has proven difficult to implement. Are the patients held central to the research undertaken? How can the trials be made more patient-centric? We asked clinical research professionals to provide their views on patient-centricity and how they believe it can be achieved in the industry. Here, we’ve gathered responses from four clinical trial experts.
Kate O'Brien - Senior Research Nurse at Albany House Medical Centre
‘Our position enables us to make our site as patient-centric as possible, as well as providing trials with the best patients. Earlier this year we started a patient interest group, using some of our patients who have done studies in the past to help us improve the experience. Elements such as improving our website, the patient information leaflets and how practical a study schedule is for patients, we can feedback to the Sponsor. This is a very important element as it allows us to see things from the patient’s perspective.
Pediatrician Dr. William van't Hoff - Director of The National Institute of Health and Research , Clinical Research Faculty at Great Ormond Street Hospital and Clinical Director for NHS engagement
'It's very much about the patients, who are absolutely ready and willing to talk. All the pharma companies we interact with are also increasingly aware. The issue is how to join that up. One of the things we've been doing in NIHR is to create base of patients called patient research ambassadors. Anyone who has taken part in research can sign up and they can do as much or as little as they want at a local level at their own hospital, or at a national or international level.
Once we have that base of patients that we're developing, then the key is how do we interact them with industry who are asking for that engagement.'
Anna Matranga - Strategic Sourcing R&D at AMC Alliances and Consulting
'With all of these wearables, what we should see is that the patient is coming less into the clinic as we're doing the evaluations at home. But the time that they do come into the clinic is an opportunity to really for them to have that time with the investigator or the doctor to really have a collaborative approach in terms of how they manage their own disease or condition.'
Begonya Nafria - Patient Advocacy Manager in research at the SJD Barcelona Children's Hospital
Patient networks and advocacy groups: 'They are a nice way to include the voice of the patients. These groups are well connected with clinical research centers and sites where clinical trials are performed, and they work very closely with researchers from these sites.
We're able to ask the children if the design of the protocol is right for them or not. We can ask how we can improve the protocol and then include their views and needs. These studies are of course designed by researchers and we need to include the voice of the patients.
The young patients can also contribute at other stages of clinical trials. For example, they help us to write and improve signed documents to ensure they are valid for children.
It's nice to ensure that along the process of pediatric clinical trials, we are working with the right tools, the right knowledge, and the right language to address children.