A brand new evidence-based toolkit to support pharma companies (and others) to be patient-centric

"The new November 2017 self-evaluation toolkit explores the most practical and comprehensive approach I have ever observed across the existing assessment frameworks for patient-centric programmes and initiatives. Every aspect must be taken into consideration when analysing what a company does to address unmet patient needs, hopes and expectations delivering real value. The industry, patients and community still have a challenge of inconsistency and absence of unified methodology clear for all and easily implementable by several stakeholders. I believe that the tool will help to identify any gaps/opportunities within engagement with patients as well as caregivers, advocates, activists and members of patient organisations; develop patient-centric strategy and address cross-stakeholder inconsistency."

Dr Oleksandr Gorbenko, ViiV Healthcare

THE PATIENT-CENTRIC TOOLKIT:

more information on the

BEING PATIENT-CENTRIC toolkit

Designed with the support of:

• 2,000 patient groups worldwide.
• Of 50+ different medical specialties.
• From 100+ countries.
• With international, national, regional, or local geographic remits.

Patient groups describe 9 major attributes that contribute to the process of corporate patient-centricity;  Every one of the attributes is, in turn, shaped by numerous fundamental factors;  For each of the fundamental factors, patient-group comments received by PatientView were reframed in the November 2017 Being Patient-Centric toolkit as questions that the patient groups themselves might well pose to companies. Patient groups pose 139 questions to pharma companies that are seeking to be more patient-centric.

SUPPLEMENTS TO THE TOOLKIT:

more information on being patient-centric in R&D:
​ ​
(1) THE perspective OF patient groups worldwide

MORE INFORMATION ON BEING PATIENT CENTRIC IN R&D:
​
​(2) THE PERSPECTIVE OF US PATIENT GROUPS

TWO SUPPLEMENTS TO THE TOOLKIT FOCUSING ON PATIENT INVOLVEMENT IN R&D (ONE OF THE NINE ATTRIBUTES):

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. Both 2018 supplements to be used in conjunction with PatientView's evidence-based Being Patient-Centric toolkit (published November 2017),

Global perspective on patient/patient-group involvement in research, and in development 

• Summary of the current global situation in patient/patient-group engagement in pharma research, and pharma development.
  
• A description of what patient groups expect in terms of their engagement at each of the key stages of R&D, and pharma activities at each of the key stages of R&D.
  
• A list of 128 ‘prompt’ questions posed by these patient groups—aimed at helping companies determine just how patient-centric they are at each of the key stages of research, and at the key stages of development.
  
• Plus … a 2018 case study of a patient group, as it attempts to be involved with drug R&D.​

(2) The November 2018 US  supplement provides:

• 104 US patient groups responded to an August-October 2018 PatientView US survey on four important topics: [1.] How patient groups define ‘patient-centric R&D’. [2.] The FDA’s Patient-Focused Drug Development (PFDD) initiative. [3.] Pharma’s performance at being patient centric in R&D. And … [4.] The role of ‘real-world’ evidence (RWE) versus that of clinical trials.
  
• An Appendix analysing the feedback from all 104 respondent US patient groups—and, more specifically, the responses from the respondent US patient groups specialising in cancer, rare diseases, and neurological conditions.