This is the second of two 2018 supplements that focus on pharma's patient engagement in R&D. Both supplements are intended to be used in conjunction with evidence-based Being Patient-Centric toolkit (published November 2017), which identified nine key attributes of patient centricity. Pharma's success at one of the nine, however - engaging patients in R&D - has consistently been rated as unimpressive by patient groups. For example, the 2017 Corporate Reputation of Pharma survey (results published April 2018) found that 59% of the 1,300 respondent patient groups thought pharma just "Fair" to "Poor" at engaging patients/patient groups in product research; and 60% thought the same for pharma's record at engaging patients/patient groups in product development.
Worldwide, only 13% of patient groups responding to 2017 Corporate Reputation of Pharma survey said that they worked with pharma companies on clinical research, and only 12% said that they worked with pharma on clinical trials.
Patient-centric drug R&D: an area in need of improvement
Pharma's poor performance at engaging patients/patient groups in R&D prompted PatientView to focus further surveys, research, and analysis on the subject during 2018. This activity has led to two, new, in-depth supplements to the original November 2017 Being Patient-Centric toolkit:
1. A US-based supplement (published November 2018); and...
2. A Global-wide supplement (published 11th December 2018).
Case study: Barth Syndrome Foundation
Appendix 1: Patient-Centricity in R&D – a revised and updated toolkit
Appendix 2: Patient-group feedback on how pharma should engage with patient groups/patients across all R&D functions
Appendix 3: Patient-group feedback on barrier to pharma engagement with patient groups/patients in R&D
Appendix 4: Patient-group feedback on recommendations on improving pharma engagement with patient groups/patients in R&D
Appendix 5: Initiatives undertaken by nine pharma companies to incorporate patients/patient groups into company R&D activities, 2017
The pharmaceutical industry has long considered its primary customers to be healthcare professionals. This historic approach to patient care has, in the past few years, been eroded by consumer expectation and online knowledge sharing among patients - leading to patients becoming ever more informed, confident, and empowered. Wider attitudinal shifts across entire healthcare systems are also forcing pharmaceutical companies to focus more on patients' needs. Regulations are opening up more patient involvement; payers and insurers are focusing more on patient involvement and choice; and even physicians are becoming more patient-centric. As a result, a new model is emerging - one that places patients (and their carers, family and personal supporters) at the heart of the pharmaceutical business. Such a shift is a gradual evolution, but still represents a significant challenge for the industry - which must seek to accommodate regulatory demands, shareholder interests, and broader societal challenges (such as a healthcare system’s ability to pay for new products).
One US cancer patient group comments on some of the challenges that face pharmaceutical companies interested in patient-centric drug R&D:
“Every company is different. It depends upon the size of the company, their culture towards working with patient groups and patients, and how they engage in that way. Larger companies tend to have patient-advocacy staff or teams, but that often creates additional challenges to engage with other departments within the organization. Smaller biotech and pharma companies are more nimble, have fewer people to interact with, and can provide easier access to various staff, but also lack resources to support the patient organizations in ways that are mutually beneficial. Or, as the drug-development process moves through the cycle, the company is sold, or the compound is sold - both of which makes it challenging to maintain consistency throughout the entire drug-development cycle from a patient-leader perspective, as relationships must be developed over and over again.”