Global Patient Survey – the European Context

As its name suggests, the Lymphoma Coalition’s Global Patient Survey is a global initiative carried out every two years, which best embodies the organisation’s mantra and ethos of “Think Globally, Act Locally”. By gathering global information and data on lymphoma patient experience, LCE can then develop hard evidence and metrics on the bigger picture across Europe, which we can analyse and disseminate at a national level. That combination of global, regional and local intelligence can be a major driver for change within member organisations’ countries and across Europe as whole.

Through the Global Patient Survey, we aim to:

  • Facilitate wide distribution of the survey data to European patient organisations, patients/carers and healthcare professionals to ensure each audience has a clear understanding what respondents are reporting.
  • To drive change and improvements in the European lymphoma environment on issues that are reported in the survey data.
  • To raise awareness of lymphoma and the patient experience across Europe

LCE analyses and disseminates the survey data and insight in the following ways:

  • Publishing a Europe-wide report drawn from the global survey data and providing a European context for the survey’s lymphoma subtype data analysis and corresponding reports.
  • Reviewing and producing country-level reports for Europe.
  • Delivering supporting materials and collateral to support member organisations to promote and further distribute the survey data and reports.
  • Providing webinars and conference calls to member organisations and their staff/volunteers by way of helping them understand the key points and learnings from the survey reports.
  • Presenting the data at education sessions within European congresses and conferences.

The HARMONY Alliance

As many blood cancers are rare, and healthcare practice varies across the EU, a lack of data on relevant outcomes represents a challenge for clinicians, researchers, and other decision-makers like regulators and HTA bodies, resulting in limitations for patient access to the best healthcare. LCE is a member of the HARMONY Alliance, which aims to use "Big Data and Big Data analytics" to deliver information that will help to improve the care of patients with these diseases.

HARMONY will gather together, integrate and analyse anonymous patient data from several high-quality sources. This will help define clinical endpoints and outcomes for these diseases, which are recognized by all key stakeholders in the Healthcare -systems. The Alliance was established in 2017 and is planned to last for five years.


Patient Organisations
LCE collaborates with a number of European patient organisations and networks:

EURORDIS-Rare Diseases Europe – a non-governmental patient-driven alliance of patient organisations representing 798 rare disease patient organisations in 69 countries, acting as the voice of 30 million people affected by rare diseases throughout Europe. LCE is an associate member.

WECAN (the informal Workgroup of European Cancer Patient Advocacy Networks) aims to strengthen patient advocacy in Europe and to improve outcomes for all cancer patients. Through collaborating on and developing joint projects the 19 European cancer umbrella groups involved in WECAN can act as a unified cancer patient community on common interests, providing a resource for the participants and external organisations. LCE is a WECAN member


Healthcare Professional Organisations

LCE is associated with key European healthcare professional organisations, including:

European Haematology Association’s European Affairs Committee – the Lymphoma Coalition Europe has one of three patient representation places on the committee, which has the purpose of serving and furthering the interests of haematologists and the discipline of haematology in Europe.

European Hematology Association (EHA) Patient Organization Work Group – LCE is a member of the Patient Organisations Work Group, which works with the EHA secretariat and board to develop a patient advocacy track for the annual congress and ensure patient representation in key EHA initiatives.

European Society for Medical Oncology (ESMO) Patient Advocates Working Group – LCE works closely with the Patient Advocates Working Group, ensuring patient representation at the annual congress and in key society initiatives.

European CanCer Organisation (ECCO) Patient Advisory Committee – LCE is a member of the Patient Advisory Committee, which is represented at board level and provides input into all the ECCO’s work on promoting and implementing the concepts of multi-disciplinarity in cancer diagnosis, treatment and care.


Research organisations
LCE collaborates with the European Lymphoma Institute (ELI) and is developing relationships with several European research groups focusing on lymphoma and CLL, including the EHA Lymphoma Group (EHA LyG) and the European Research Initiative on CLL (ERIC).

 

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