Patients as partners: The future of clinical trial design?
May 9, 2019 | CRO, Patient-centricity, Patients as partners, clinical trials
‘Patient-centric’ is a term that appears in almost all clinical trial communications – but what does it mean and how do we achieve it?
Patient Centricity is the idea that services and processes are all designed with the focus on the patient’s needs and preferences. This concept was brought into the limelight back in 2012 by the NHS patient charter tagline of “no decision about me, without me”. However, at present, the guidance from regulatory bodies that prevents promotion to patients has been hugely oversimplified by some giving the impression that companies should not even talk to patients when considering business decisions. The movement to overcome this misconception has led to the patient-centricity revolution within the healthcare market.
A survey conducted by Scorr and Knect365 highlighted how well employees of pharmaceutical companies and contract research organisations (CROs) believed they were implementing a new patient-centric structure within their business. The results concluded that most people agreed on the definition of patient centricity and truly believed that it is a necessary improvement needed in the healthcare industry. However, 1 in 5 of employees believed that it was just another buzzword that was meaningless and most likely “just a phase”.
Many CROs believe that adopting a more patient-centric design to their clinical trials will result in greater patient engagement, and more enrolled patients retained in the study. It could also increase recruitment numbers in the first place, which currently is one of the greatest challenges in clinical trials. Currently, some CROs are being described as “patient-focused” but not yet fully “patient-centric” as they still regard the healthcare professional as the customer rather than the patient. The current online atmosphere of “Dr. Google” is creating more knowledgeable patients with information at the tip of their fingers, and with this increased education comes a desire to be included in decisions regarding the healthcare available to them.
This movement has been described in the industry as a ‘change of culture’. Where many decisions are currently made for the benefit of the business and health professionals, the primary focus in a truly patient-centric company will be the patients and their wellbeing. Most of the negative feedback from the Scorr and Knect365 report was based around efficiency and cost. Many employees of CRO companies believe that if the patient was to be involved in key decision-making stages, projects would be a lot more expensive and time consuming.
But what are the benefits? Would being a more patient-centric business improve a company’s image? Patients may be more likely to trust the patient-centric companies, leaving those behind in the adoption of these ideals struggling to increase their patient pool. The clinical trial industry has learnt a lot from its patients already. Many people have said that they would be happy to participate in a clinical trial, but there is no study site near them. As much as the travel cost is often reimbursed, the time cannot be and this is a burden for many potential clinical trial patients. Patients have also expressed a desire to see the results from a clinical trial, in a more simplistic way than the final report, so that they can see the impact that their participation has had.
A project is currently being undertaken by KCR (Kiecana Clinical Research) called #HumanBehindEveryNumber. It is designed to research into clinical trials from a patient’s perspective to see what they can improve on. They are looking into the experience as a whole – right from the initial education and awareness of a clinical trial, to the end of monitoring and publication of results. KCR hopes to determine the stages of a trial that are the most daunting for a patient – and thus where they are most likely to discontinue participation. Focus groups such as this could drastically improve patient recruitment and retention across the clinical trial industry.
Ipsen is already utilising findings from a focus group in their clinical trials. They currently build ‘patient boards’ to engage with the clinical trial designers for their phase III trials. This allows them to discover the endpoints that matter to the patients, or ‘Patient-Reported Outcomes’, that can put a quantitative value on changes to quality of life. The rise of mobile health and wearable tech is also helping to facilitate monitoring of patient data and allowing patients to communicate their experiences to study staff with ease.
So, is patient-centricity the future of clinical trials? It certainly seems to be heading that way. Many big pharma companies and clinical trial sponsors are keen to adopt the patient-centric movement and start viewing the patient as a partner as opposed to just the end user. Collaboration between pharma companies, advocacy groups, caregivers, healthcare professionals and, most importantly, the patient themselves is key to being successful in making the most of new opportunities and developments coming to the industry.
With patients becoming more educated and empowered, it’s time to talk to your stakeholders and communication partners about how you can become a patient-centric organisation.
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