SYNaPsE - SYNergising Patient Engagement
First Edition BOGP (8) Second Edition BOGP (5)
Canada (1) Germany (1) Spain (1) United Kingdom (2) United States (1)
Access Advocacy (policy advocacy, lobbying) Care Delivery/ Care pathway Education (awareness, health promotion) Gap analysis Organization / System Development Policy Research Other
Neurology/Parkinson's Disease (1)
Patient Advocacy Organization (4) Academic Medical Center/Hospital/Practice (2) Pharmaceutical, Biotech, Medical Device Company (2) Regulatory Body (0) Private Public Partnership (0) Think Tank (0) Insurance Company (0) Government (0) Start Up (3) Other (2) Research Institution (0) Research Funder (0) Health technology Assessment (HTA) body (0)
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)
Research and discovery Preclinical Clinical study phase 1 Clinical study phase 2 Clinical study phase 3 Regulatory Review & Approval Health Technology Assessment (HTA) activities Post marketing

  Develop AKUre - Patient-led clinical trial

Aku Society
CS

Europe

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

Pfizer

Germany

Understanding patient and stakeholder needs alongside the patient journey - A case from a Pharma Company

The Synergist

Global (worldwide coverage)

  Driving Innovation and Change via PE Dashboard

Janssen - Johnson & Johnson

Global (worldwide coverage)

  Patients and community feedback on PLSs (Plain Language Summaries)

GlaxoSmithKline, ViiV Healthcare

Global (worldwide coverage)

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

NIHR Sheffield Biomedical Research Centre (BRC)

United Kingdom

Completed over one year ago

  Kids Barcelona - Young Person’s Advisory Group

Sant Joan de Déu Research Foundation

Spain

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

CANCER101, The Health Collaboratory

Global (worldwide coverage)

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

Parkinsons UK

Global (worldwide coverage)

Pregnancy and Parenting with Arthritis

Canadian Arthritis Patient Alliance
LP

Canada

A sickle cell community built by the community for the community

rareLife solutions

United States

Currently underway

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

Envision Pharma Group

Global (worldwide coverage)

Completed over one year ago