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This badge gathers all Book of Good Practices (BoGP) cases, relevant people and organizations in one page for easier overview. Remember to check out also the BoGP landing page to search and filter the cases across all editions.

The BoGP was originally created to address a need for real-life examples of what good looks like in patient engagement. The Book can be used as a resource of PE practices shared by others with recorded outcomes and lessons learned, but also as inspiration to do more PE.

All cases submitted to the BoGP are screened by PFMD team and reviewed by an external reviewer panel (for more information on the review and inclusion of cases in the BoGP, see this article from the DIA Global Forum).


Search for relevant cases or download and read the whole BoGP with its multiple editions.

Contact the PFMD team if you have a case you'd like to submit for the next edition of the BoGP!


Begoña Nafría Escalera

Patient Expert Reviewer en Research Involvement and Engagement Journal

Esplugues de Llobregat, Spain

Sant Joan de Déu Children's Hospital / Sant Joan de Déu Research Foundation / From Testing to Targeted Treatments (FT3)

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Natasha Ratcliffe

Research Involvement Manager

London, United Kingdom

Parkinsons UK

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Katherine Capperella

Global Patient Engagement Leader

United States

Janssen - Johnson & Johnson

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Sarah Krug

Executive Director

New York, United States

CANCER101 / Society for Participatory Medicine

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Ciarán Scott

Professor Karen Woolley

Global Lead, Patient Partnerships, Envision Pharma Group

Envision Pharma Group

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Laurie Proulx

2nd Vice-President

Ottawa, Canada

Canadian Arthritis Patient Alliance

Laura Evans

Sheffield, United Kingdom

NIHR Sheffield Biomedical Research Centre (BRC)



A sickle cell community built by the community for the community

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

Pregnancy and Parenting with Arthritis


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

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

  Patients and community feedback on PLSs (Plain Language Summaries)

  Kids Barcelona - Young Person’s Advisory Group

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

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

  Driving Innovation and Change via PE Dashboard

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

  Develop AKUre - Patient-led clinical trial




Develop AKUre - Patient-led clinical trial

04 Nov 2019 Book