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Haematology and Stem Cell Theme Patient and Public Involvement

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Haematology and Stem Cell Theme Patient and Public Involvement Patient and Public Involvement Haematology and Stem Cell Theme Case Study Background Around 3-4% of people will develop either lymphoma or Chronic Lymphocytic Leukemia (CLL) during their lifetime. Lymphomas are the 5th most common cancer in the UK. Research has focused on treatments and cure, but patients sometimes also have other priorities. We want to ensure research and treatment into lymphoma is guided by the experience and expertise of patients and relatives as well as clinicians and researchers. What we did • Graham Collins, the OUH lead lymphoma consultant, partnered with the patient and public involvement (PPI) group, the Oxford Blood Group. • Clinicians and Oxford University researchers attended a workshop with patients and relatives. The workshop was to discuss patients’ research priorities; the things that patients feel need more attention from researchers. • Research into delays in diagnosis emerged as one of the most important issues for patients. Blood Cancer UK also found that 30% of people with blood cancer have to see their GP three or more times before they get a diagnosis. What difference did it make • As a result of this workshop, the Oxford Lymphoid Diseases Study Group will undertake research to examine the diagnosis of Hodgkin lymphoma, in partnership with primary care colleagues at the University of Oxford. • The workshop informed the National Cancer Research Institute (NCRI) Hodgkin Lymphoma strategy. • This work is an example of patient priorities influencing the research agenda towards work that has not attracted attention from researchers until now. • The new Oxford Lymphoid Diseases Study Group fosters translational research and ensures research priorities are defined by patients..
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