Nirmala Singh, formerly Patient Engagement Director at the National Kidney Foundation shares her views about the effect patient engagement will have on the healthcare sector in a video filmed at the DIA 2016 conference:
PFMD was present at the first ever Patients as Partners (PaP) event to be held in Europe (5-6 February, London). Nicholas Brooke, PFMD CEO and Jan Geissler, Director at EUPATI, talked about the fragmented patient engagement landscape, the journey towards a systematic approach to patient involvement and the Global Landscape Mapping and Networking Tool as a first step in co-creating an implementable meta-framework for patient engagement across the life cycle of medicines.
Reaching our common goal of meaningful patient engagement and involvement in medicines development and lifecycle requires all stakeholders to not only have a common purpose and vision but also clear understanding and alignment of expectations.
That’s why we have launched the Stakeholder Expectations Matrix – an ambitious survey-based project to better understand and clarify stakeholder expectations from patient involvement in drug development.
As part of the effort to co-create a meta-framework for patient engagement, PFMD organized 3 workshops with 45 international participants representing patients/ patient organisations, industry (including. CRO and biotech), independent experts (with backgrounds from academia, research and also industry), HTA and regulatory. Each workshop was designed to focus on a specific phase of medicines development and lifecycle and participants were specifically selected based on what they could bring to the table. We now have an open and engaged community of taskforces with specific actions to drive co-creation.
Today (Tuesday 28 February) marks Rare Disease Day. Mathieu Boudes and Virginie Hivert from PFMD member organisation EURORDIS-Rare Diseases Europe highlight two flagship activities to make sure the voice of rare disease patients is heard.
Rare Disease Day primarily aims to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. This awareness is an essential step in advocating for patients with rare disease and is also one of the aims of EURORDIS-Rare Diseases Europe – an alliance of 738 rare disease patient organisations in 65 countries. EURORDIS-Rare Diseases Europe works across borders and disease conditions to improve the lives of people living with a rare disease and in the 20 years since being established has made significant progress toward this overarching aim. A big focus of our work is to optimize patient engagement in research, in healthcare services, in medical and social care and in the lifecycle of medicinal products.
One of the challenges for rare diseases is building a community where there are only few patients with each condition – so coming together, connecting and learning from experience is critical for us. We have included two flagship programmes into PFMD’s patient engagement landscape global mapping and networking tool to share our experiences and efforts but also to connect and learn from others in the patient engagement community who have shared their own initiatives on the online platform. We can get inspiration by using the tool to find out what’s happening in other non-rare disease areas.
PFMD member Bettina Ryll, founder of Patient Melanoma Network Europe and Chair of the Asthma Patient Advocacy Working Group shares her views about the development of meaningful patient engagement in a video filmed at the DIA 2016 conference:
Today (Wednesday 15 February) marks International Childhood Cancer Day. PFMD member Sarah Krüg, Executive Director of CANCER101 and former lead of pediatric disease management pathways at Memorial Sloan Kettering Cancer Center reflects on the need for collaborative patient engagement in the setting of childhood disease.
Cancer isn’t one size fits all. The cancers that develop in children are often different from those that adults develop. Childhood cancers are not strongly correlated to lifestyle and environmental risk factors, in contrast to adult cancers. In addition the long-term side consequences of treatment can be debilitating, including psychological and emotional effects that can manifest later in life.
Just over 10 months ago we launched the PFMD Global Mapping and Networking tool – a dynamic user-populated platform that categorizes and ‘maps’ patient existing initiatives, frameworks and organisations. The goal is to capture the patient involvement practices and its experts and gather them in one place to categorise them and feed the research and work on this issue as well as identifying good practices and share them. We urged those involved in patient patient engagement to ‘get on the map’ and had a tremendous and growing response to this call to with 113 organizations and 172 initiatives already in the tool. For the first time we are moving towards a global overview of what’s happening and Who’s Who in patient engagement.
It’s always really exciting to showcase something new and unique for the first time. So we are really thrilled to be taking the PFMD Global Landscape Mapping and Networking Tool on the road at the first ever Patients as Partners event to be held in Europe.
The Tool is a dynamic user-populated platform that categorizes and ‘maps’ existing initiatives and frameworks to provide snapshot views of the patient engagement landscape through different stakeholder perspectives. PFMD will have a booth at the Patients as Partners conference in London (5-6 February) where attendees can find out more and try out the Tool for themselves. They can explore the 154 initiatives already on the Tool, develop specific reports and more importantly GET ON THE MAP by adding their own patient engagement initiatives. You can follow our activities during the conference here.
Graeme Johnston, patient and member of the Advisory Board of PFMD discusses inspiring new developments in patient engagement and some potential challenges in a video filmed at the DIA 2016 conference: