Patient leaders join new pharmaceutical industry Patient Advisory Council

The Association of the British Pharmaceutical Industry (ABPI) have formed a new Patient Advisory Council including eight leaders from across the patient and health charity sector. The new Council will bring together industry and patient advocates to help bring the patient voice to the ABPI’s plans to ensure a more patient-centred future strategy, policy, and […]

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Research supports better integration of patient voice in health technology assessments

A report from Myeloma UK and the National Institute for Health and Care Excellence (NICE) outlines the findings from a study looking at how patient preferences could be more formally incorporated in health technology assessments (HTA). Feedback from a patient and family workshop demonstrated how myeloma impacts the lives of patients in different ways and […]

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Patient engagement in clinical development

The National Institute for Health Research (NIHR) is rolling out a new patient engagement service for the life sciences industry. This initiative, which has been in development for almost a year, aims to bring patients and life science companies together earlier in the clinical development process, before a study protocol is finalised. This will enable […]

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Sources of frustration for patients with kidney cancer

This observation study involved 450 patients with renal cell carcinoma (RCC) and was conducted via social media and patient networking platforms. The survey was designed to investigate frustration points associated with the care of RCC patients. Overall, 71.5% reported frustration, including emotional (48.4%) and practical (23.1%). The most common points of frustration included fear of […]

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ASCO GU 2019: Patient perspectives on cytoreductive nephrectomy after CARMENA

The following survey assessed patient views related to cytoreductive nephrectomy following publication of the results of the CARMENA trial, and were reported at the American Society of Clinical Oncology (ASCO) genitourinary (GU) conference held in San Francisco in February 2019. The survey found that overall survival should not be overestimated as the most important aim […]

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Beyond patient centricity – supporting the support network

The following article discusses the patient-centric model going ‘beyond the patient’ to look after the friends and family who care for their loved ones outside hospital and the clinic. It talks about the benefits of care from family and friends, embracing the patient voice (listening and responding), and an informed and reliable support network for […]

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Patient value: Perspectives from the patient advocacy community

In this paper, a group of patient advocates explore the varying definitions of patient value and make positive recommendations for working together to strengthen the patient voice in this area. The authors call on framework developers, the patient advocacy and research communities, the healthcare industry and decision-makers to undertake specific actions to ensure patient value […]

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