Patient-centricity is one of those terms that connects to so many different aspects of clinical trials and yet is so often discussed in broad, theoretical terms. Over the last six months, we have spoken to dozens of drug development professionals leading the way in putting the patient at the centre of clinical research. Here we have gathered seven examples of how they're doing it and where they are succeeding.
1) Taking a patient centric approach to pediatric clinical trials: 'We have more than 20 years of experience with adult patients, but far more limited experience with children and young patients.' Patient Advocacy Manager at Sant Joan de Déu Children’s Hospital in Barcelona, Begonya Nafria Escalera, explores strategies that put the patient at the core of research.
2) Patient recruitment in emerging markets: With the current high cost of research conducted in the US and EU, researchers have turned to developing countries for research participants for a number of reasons. For all the benefits of off-shore recruitment, there are significant hurdles to overcome: adapting the universal paradigms of research to local cultural norms, language, ideas, and literacy levels can be demanding without local support.
3) The ethics of patient consent: As Senior Healthcare Ethics Lecturer at University College Cork, a legal advisor to the Clinical Research Ethics Committee and a consulting solicitor specialising in health law, Dr Kieran Doran is well placed to discuss ethics in clinical research. For him the biggest issue at the moment is around patient consent; ‘making sure patients have all the relevant information to participate in trials’.
4) Patient recruitment and support in rare diseases: AKU Society CEO Oliver Timmis explains how putting patients at the heart of everything allowed the group to recruit 50% of their patient population in 9 months. Similarly, Ataxia UK are combining cutting-edge research with a patient-centric approach to care for those affected by a rare disorder. We visited the Specialist Ataxia Clinic in London - watch the video interview here.
5) Technology in aspirin research: Virtual trials, personalized patient data and the use of electronic health records are part of pioneering efforts in patient recruitment for the ADAPTABLE Aspirin Study - the first project to be conducted through PCORnet, the National Patient-Centered Clinical Research Network.
6) Stupid Cancer young adult cancer charity: Founder Matthew Zachary describes how 'Patient-Driven Technology is empowering patients to make more informed and objective decisions' and 'patient advocate organizations focus on giving patients the best available information to help them achieve their goals'.
7) Home care visits: Even in studies with a patient population suffering from mild diseases, the time consuming aspect of study participation keeps many eligible patients off from taking part in studies. To avoid low recruitment rates or high drop-out rates in such studies, the concept of home care visits in clinical studies is becoming more and more popular over the last years.
This post is part of Patients as Partners Month - explore more here.