Discover inspiring patient engagement initiatives

The third edition of The Book of Good Practices is here.
A selection of patient engagement initiatives that can be considered good practices. The selection used a methodology based on the Patient Engagement Quality Guidance

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The Book of Good Practices

Your go-to tool for patient engagement

Not sure what good practice is?

Use this tool to reach a common agreement about what is a Best Practice in patient engagement.

Demonstrating the value of patient engagement

The Book caters to the high demand and urgent need to provide examples demonstrating the quality and impact of patient engagement work.

Guidance for newcomers

If you are just starting your patient engagement journey this book can offer you guidance and ideas on how to get it right.


Patient/Caregiver Pathway Mapping & Patient Shark Tank
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Patient/Caregiver Pathway Mapping & Patient Shark Tank
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Driving Innovation and Change via PE Dashboard
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Kids Barcelona – Young Person’s Advisory Group
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Building patient centricity into process: clinical development – HILFE FÜR MICH (Patient Navigator)
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Patients and community feedback on PLSs (Plain Language Summaries)
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Develop AKUre – Patient-led clinical trial
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Anonymus Case Study

Understanding patient and stakeholder needs alongside the patient journey – Case from a Pharma Company
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Consulting a patient and carer panel on the design and delivery of a proof of concept drug repurposing trial in Parkinson’s Disease
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Patient involvement in preparing clinical research peer-reviewed publications or results summaries: A systematic review
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Pregnancy and Parenting with Arthritis
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HeadUp Collar: Co-creation of a new cervical orthosis for patients with Motor Neuron Disease/ neck weakness
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A sickle cell community built by the community for the community
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Patient Partnership Program
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Consulting a patient and carer group on the delivery of Exoskeleton assisted walking to aid cardiovascular fitness in patients with gait problems due to Multiple Sclerosis
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KPI framework to measure progress on the Novartis Commitment to Patients and Caregivers
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Clinical Trials – Something for You? Information about participating in Clinical Trials
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Global Oncology Patient Insight Panel
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Consumer Involvement in Research Program
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Roadmap for a future-proof healthcare system
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Leukaemia Patient Preference Study
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Reducing and mitigating the burden of clinical trials on patients and care partners
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R&D Key Performance Indicators and Patient Engagement Planning – a mix of casesReducing and mitigating the burden of clinical trials on patients and care partners
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Read the methodology behind

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The Book of Good Practices

Co-creating a robust and coherent framework for patient engagement requires collective effort and commitment. If you are curious to find out how the initiatives for the Book of Good Practices were selected, check out our publication in DIA Global.

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Be a part of the next edition!

We want to hear from you. Contribute to the “Book of Good Practices” and join the next wave of the selection process.

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Who developed this tool

The “Patient Engagement Management Suite” is brought to you by the PFMD partnership.