Patient Focused Medicine Development – PFMD
Making systematic patient engagement a reality! Across medicine and device lifecycles, digital health, data and health systems for better outcomes.
PFMD is a not-for-profit collaborative initiative benefiting patients and health stakeholders by designing a patient-centred healthcare system WITH patients and all stakeholders. They co-create ways for companies to improve their Patient Engagement Management practices.
Integrating the voice of the PATIENT across the lifecycle of medicine
Patient Focused Medicines Development (PFMD) aims to transform the way in which we understand, engage, and partner with patients globally in the design and development of research and medicines by focusing on unmet patient needs. We are bringing together and synergizing disparate but complementary efforts that integrate the voice of the PATIENT across the lifecycle of medicine.
Learn more > PFMD Learning -About
Learn more > https://pemsuite.org/
The PFMD network is making sure to aggregate existing knowledge and tools, identifying good practices and coherently combining them before designing accessible and useful avenues for the various audiences that will use them.
https://pemsuite.org/
Check out this Patient Engagement Platform – SYNAPSE
…Where you will also find PFMD. Along with many other organisations, and people, including me!
SYNAPSE Powered by The Synergist.
The global Patient Engagement map and network
Find everything about patient engagement and make your content available to the community.
Patient Engagement Management Suite
Your global hub for practical tools to plan, assess and execute any patient engagement initiative.
About the PEM Suite
The PFMD network is making sure to aggregate existing knowledge and tools, identifying good practices and coherently combining them before designing accessible and useful avenues for the various audiences that will use them.
The result is the Patient Engagement Management Suite (PEM Suite). A hub of co-created tools, resources and practices to help stakeholders adopt patient engagement in a systematic, efficient and meaningful way. Including How-to guides that our editor helped to co-create.
Alternatively visit the PFMD learning platform: https://learning.pfmd.org/start
The PFMD network is making sure to aggregate existing knowledge and tools, identifying good practices and coherently combining them before designing accessible and useful avenues for the various audiences that will use them.
The result is the Patient Engagement Management Suite (PEM Suite). A hub of co-created tools, resources and practices to help stakeholders adopt patient engagement in a systematic, efficient and meaningful way.
https://pemsuite.org/
Our CEO and Co-Founder Carole Scrafton is one of the many contributors to the PEM Suite. She worked on the How-to Guides. A series of guides that aim to help educate how to implement patient engagement into your research and development practices. A brief overview can be found below of the main guide she contributed to. Access to it can be found in the PEM Suite
How-To Guide for Patient Engagement in the Early Discovery and Preclinical phases
This guide takes you step-by-step through an innovative process of identifying key patient partners, gaining important insights that help improve early research from unmet needs, developing research methodology and fostering important and long term partnerships.
The guide has been co-created by 36 people from 16 organisations.
More about the faces behind the project can be found here.
Patient Engagement Open Forum 2021
The Patient Engagement Open Forum is going online with a series of virtual events planned this year. A patient-centred environment for co-creation of solutions with and by all involved stakeholders to practice and advance patient engagement (PE).
https://patientengagementopenforum.org/
Registrations are open for the sessions on October 6 & 7
Register below
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Find all the information related to the event, sessions and speakers on
the global patient engagement map and network – Synapse.
For any queries, contact the PEOF 2021 team at info@peopenforum.org
FibroFlutters
We are a Patient Advocacy Organisation & online social media communications network. Our services are for people affected by chronic illnesses and rare disease. This includes care providers, health professionals and those within the medical healthcare related industries. #notjustpatients
Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare.
To help develop, nurture and help to create a multidisciplinary approach to all aspects of medical healthcare so that #chronicillness & #raredisease patients can receive the type of care and treatments that they need.
The work we do involves disease awareness, health awareness, and, helping to point people in the direction of where to get legitimate health communications and information. As well as this we attend events and use patient voice to get important messages to help create better systems and processes for patients.
Bridging the gap between stakeholders is a different type of awareness raising. It involves sharing events and campaigns by clinicians, pharmaceutical companies, patient led projects, healthcare providers… the list is quite variable. We have newsletters to ensue this which uses our slogan – #chronicillnessVOICE for everyone #notjustpatients
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Looking for a clinical trial? click above!
Clinical trial resources for patients
Get paid to Voice your opinions. Help companies develop better products and services to help provide better healthcare for patients. Create better patient outcomes!
- RAREfest22 – At the forefront of this event are the patients themselves!
RAREfest22 is the world’s only rare disease-inspired festival attracting an audience of stakeholders alongside the public. Festival-goers listen to expert talks, watch films, interact with around 25 exhibits, hear powerful patient stories and mingle with those taking part and others attending.… Read More RAREfest22 – At the forefront of this event are the patients themselves! - International Fibromyalgia Awareness Day – Happy 8th Birthday to FibroFlutters
It doesn’t matter where you live in the World when you are given your fibromyalgia diagnosis, one of the first things you want to know is where to get information that you can rely on.… Read More International Fibromyalgia Awareness Day – Happy 8th Birthday to FibroFlutters - Redevelopment and rebranding underway at Flutters and Strutters
Our site is currently old and sporting some posts that need attention. We need to get rid of dead links and update everything. Redevelopment and rebranding is essential to us moving forwards.… Read More Redevelopment and rebranding underway at Flutters and Strutters - Real World Evidence Live: Rare Diseases & Innovative Therapies
Real-World Evidence 2022: Rare Diseases and Innovative Therapies will unite healthcare stakeholders to discuss and advance agile strategies for accelerating collaboration and patient focus in a post-COVID Europe.… Read More Real World Evidence Live: Rare Diseases & Innovative Therapies - My experience – First face-to-face event in 2 years!This week I was lucky enough to attend the ‘Patient Centricity and Collaboration Global Congress 2021, Europe, that was held in London on 8-9th November. By Paradigm Global Events, that was held in London on 8-9th November. The last time I attended such an event in person was in October 2019, in London. In this article I discuss it, my experience and share the messages that I took with me.… Read More My experience – First face-to-face event in 2 years!
- Patient Engagement Day with Prime Patient – Did you miss it?
Patient Engagement Day with Prime Patient – Did you miss it? UPDATED to include an article by Olivia Kersey, Patient Strategist, at PEP Talks, which outlines the highlights of the very first annual Patient Engagement Day.… Read More Patient Engagement Day with Prime Patient – Did you miss it?
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