September 2019

Real World Evidence (RWE) – can inform and empower!

In Sickle Cell Disease (SCD), RWE (Real world evidence) is important and useful for individual patients and families. John James, CEO of the Sickle Cell Society (SCS), speaks to HCD Economics about our forthcoming RWE research partnership.
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August 2019

Empowered patients and medicines access: meaningful participation (a case study)

Writing in the Sage Journal, Medicine Access@Point of Care, Jasmine Barman-Aksözen reports on a personal case study that highlights the importance of patient empowerment and reports on what can be achieved in terms of access to treatment. The full article, published in August 2019, is available (link below), this news item focuses on the ‘take home messages’, summarised within the paper. HCD Economics completely endorses the criteria for meaningful participation as outlined in the paper.
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August 2019

Making a difference and giving Huntington’s Disease patients and their families a real voice

Cath Stanley, Chief Executive of The Huntington’s Disease Association (HDA), speaks to Hayley from the HCD Huntington’s Disease study team about wanting to make a difference for patients and families affected by Huntington’s Disease and how the HDA partnership with HCD and University of Chester on the forthcoming Real World Evidence (Burden of Illness) study will work in practice and how the evidence drawn from the study will be a part of making that difference.
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July 2019

New Patient and Public Involvement (PPI) research paper confirms the relevance of data linkage analysis that involves PPI

An article published in the June 2019 edition of the Journal 'Research Involvement and Engagement' reports the findings from work undertaken by the Maudsley Biomedical Research Centre (BRC). The article describes the experience of the authors (Amelia Jewell et al) in setting up a service user and carer advisory group with the aim of providing feedback and advice to researchers developing or making use of database linkages in the field of mental health research. After a trial period of 12 months, the team conducted an evaluation of the group with both group members and presenters.
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