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Patient groups are crucial in building an open dialogue with healthcare professionals

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Nick York

UK CLL patient, Chair of CLL Advocates Network Steering Committee and Patient Advocacy Healthcare Liaison Officer at Leukaemia Care

Patient groups from around the globe come together in Edinburgh with the clinical research community to share insight on the latest advances in medicine, care and support of chronic lymphocytic leukaemia (CLL) patients.

As treatments for chronic lymphocytic leukaemia improve it is important that patient advocates keep pace and build capacity to aid equitable access to appropriate therapies, care and support.

Why bring patient groups/advocates together?

Blood cancers are often poorly understood, and clinical and supportive care can vary dramatically between different countries and types of blood cancer.

A diagnosis of chronic lymphocytic leukaemia (CLL) brings complex and varied, long-term psychosocial and physical challenges.

Over the last ten years, there have been great advances and changes in how chronic lymphocytic leukaemia (CLL) is treated and managed.

Recent breakthroughs are changing the CLL treatment landscape and have necessitated the updating of clinical guidelines, treatment algorithms and sequencing.

The landscape is becoming very complicated and there is much variation of interpretation, access to medicines, care and support.

It is becoming increasingly important that patient advocates can keep pace and build capacity in their own country to best support their local patient communities, influence local policy and participate in health technology assessment processes to improve access.

Bringing groups together at conferences and in a network across the globe aids with sharing knowledge and experience to advocate for equitable standards of care. Many countries do not have community or patient groups dedicated to supporting CLL patients.

Healthcare professionals need open communication with patient groups

Patient experiences and preferences are now becoming more complex and are evolving. Real-life patient and carers’ experiences of use of new treatments, the positive and negative impacts they are having on quality of life, are now being reported in large numbers.

Patient groups are ideally placed to collect and share information to evidence patient needs to help inform their support strategies.

Bringing the clinical community together with patient groups and advocates empowers both communities to understand challenges together and develop shared initiatives to improve patient experience and outcomes.

Patient groups are becoming more and more popular the world over

The CLL Advocates Network (CLLAN) was founded in 2014 by representatives from Canada, Czech Republic, France, Ireland, Italy, Portugal, UK and the United States. There are now over 30 groups from different countries forming the network.

The network seeks to enhance CLL patient care and improve outcomes by collaborating with patient groups and advocates supporting CLL.

The network seeks to improve access to novel treatments globally and to empower patients to become advocates to support local CLL communities.

The network does this by sharing best practices and resources between patient groups through annual meetings and a website.

CLL Horizons Edinburgh 2019 19-21 September

The CLL Advocates Network (CLLAN) held its first Two CLL Horizons: Learn. Share. Grow Conferences in Belgrade, Serbia in 2016 and Prague, Czech Republic in 2018. This year, they are expanding on the success of these events.

The 3rd CLL Horizons Conference (in 2019) is being held in Edinburgh to bring together 50 patient advocates and patient groups with a focus on supporting CLL patients and their families.

Advocates will join with the international clinical research community to encourage greater collaboration, share best practices and expert knowledge that will help support the needs of patients in different countries.

This year’s CLL Horizons Conference overlaps with the international Workshop on CLL (iwCLL) in Edinburgh and reports on the value and progress of collaboration between both communities.

As well as exploring the latest clinical developments and knowledge, conference sessions explore how to involve patient advocates and patient groups in healthcare initiatives.

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