Janssen modified and developed new tools to include direct patient perspectives and drive patient centered decisions:

Patient Insights Playbook and Integrated Patient Journey Template
Patients from US, UK, Australia, Taiwan and Korea provided feedback on the PE Playbook. This occurred via in depth interviews. Some modifications have been made and further modifications will be made, especially to terminology, and also to ensure that interactions are mutually positive.

Updated Target Product Profile (TPP): includes direct patient insights
To validate insights from patients, various qualitative and quantitative approaches have been utilized, depending on the project. For example, during a patient advisory board meeting, patients consistently expressed and described the impact of fatigue on their daily lives. Fatigue is well documented in the literature, however hearing directly from patients influenced the R&D team to take action and study fatigue. Although the Target Product Profile (TPP) is proprietary, it includes primary and secondary endpoints, patient reported outcomes, patient benefits, safety, tolerability, and dosing/presentation. Insights should be provided directly by patients based on descriptions of disease and treatment burden and unmet needs.

Customer Value: patient insight into formulation/supply chain
Patient Voice Plans in R&D: patient insight into compound and clinical strategies and protocol design
Elements of study designs modified include reordering tasks/tests and reducing the length of visits. A new Director, Patient Insights has joined the team and is currently conducting studies in over 13 countries with more than 1,300 patients across all 11 disease areas. The purpose is to gather patient feedback on protocols in order to make modifications before protocols are finalized.

A recent example of modifying study design was reordering tasks based on patient feedback. The team originally planned to start with more difficult tasks and end with simpler tasks as a "reward". However, based on direct patient insights, a decision was made to start with simpler tasks and build up to more difficult, so that patients could build confidence. This change will apply to multiple studies for the same disease area.

Internal Compliance Guidebook: best practices on how to implement patient engagement
Practical examples: modifying a device design based on patient insights, resulting in more correct dosing of medication, re-ordering tests in a clinical trial, reducing the length of visits in a clinical trial, decision to measure fatigue and sleep patterns based on patient insights, working with patients to develop a new symptom diary, and involving patient groups in development of web site content. These examples are from multiple disease areas within the company.

Driving change via Patient Engagement Dashboard
Objective: To drive behaviour to incorporate direct patient voice early and understanding barriers.


Activation: they are measuring the amount of organizational change.
Enablers: they are seeking to understand roadblocks to organizational change.
Sustainability: they are measuring the impact of these Patient Engagement activities.

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