First Edition BOGP (0) Second Edition BOGP (0) Third Edition BOGP (10)
Australia (1) Canada (1) Germany (2) Spain (1) United Kingdom (3) Norway (1) United States (2)
Access Advocacy (policy advocacy, lobbying) Care Delivery/ Care pathway Education (awareness, health promotion) Gap analysis Organization / System Development Policy Research Other
Musculoskeletal/Multiple Sclerosis (MS) (1) Across all conditions/Other (1) Neurology/Parkinson's Disease (1)
Academic Medical Center/Hospital/Practice (3) Biotech Company (0) Foundation (0) Government (0) Health technology Assessment (HTA) body (0) NGO (0) Insurance Company (0) Pharmaceutical, Biotech, Medical Device Company (0) Medical Device Company (0) Private Public Partnership (0) Patient Advocacy Organization (4) Regulatory Body (0) Pharmaceutical Company (9) Research or Technical Organisation (0) Research Funder (0) Research Institution (0) Start Up (3) Think Tank (0) Other (4)
Patients Patient organisation Healthcare professionals Policymakers Regulators Payers (usually governmental or public bodies, reimbursement) Health Technology Assessment (HTA) bodies Pharmaceutical companies or industry (incl. Medical device and biotech companies) Researchers (investigators and academic researchers) Research funders Other (please specify)
Shared purpose Respect and accessibility Representativeness of stakeholders Roles and responsibilities Capacity and capabilities for engagement Transparency in communication and documentation Continuity and sustainability
Research and discovery Preclinical Clinical study phase I Clinical study phase II Clinical study phase III Regulatory Review & Approval Health Technology Assessment (HTA) activities Post marketing

KPI framework to measure progress on the Novartis Commitment to Patients and Caregivers

Novartis

Global

Currently underway

  Develop AKUre - Patient-led clinical trial

Aku Society
CS

Europe

  Patient/Caregiver Pathway Mapping & Patient Shark Tank® Health Collaboratory

CANCER101, The Health Collaboratory

Global

  Supporting patient involvement in the development of new treatments Parkinson’s UK

Parkinsons UK

Global

  Kids Barcelona - Young Person’s Advisory Group

Sant Joan de Déu Research Foundation

Spain

Completed less than one year ago

  Driving Innovation and Change via PE Dashboard

Johnson & Johnson

Global

R&D Key Performance Indicators and Patient Engagement Planning– a mix of 3 cases

Takeda Pharmaceuticals

Global

Currently underway

Consumer Involvement in Research Program

Cancer Council NSW
KN

Australia

Currently underway

  HeadUp Collar: Co-creation of a new cervical orthosis for patients with Motor Neuron Disease/ neck weakness

NIHR Sheffield Biomedical Research Centre (BRC), Lab4Living

United Kingdom

Completed more than three years ago

  Building patient centricity into process: clinical development - HILFE FÜR MICH (Patient Navigator)

Pfizer

Germany

Consulting a patient and carer group on the design and delivery of a proof of concept drug repurposing trial in Parkinson’s Disease

NIHR Sheffield Biomedical Research Centre (BRC)

United Kingdom

Currently underway

Patient involvement in preparing clinical research peer-reviewed publications or results summaries: A systematic review

Envision Pharma Group

Global

Completed more than three years ago