The Value of Patient and Public Involvement in Trial Design and Development.
نویسندگان
چکیده
The Independent Cancer Patients’ Voice (ICPV; www. independentcancerpatientsvoice.org.uk) is a patient advocate group bringing the views and experience of those affected by cancer to the cancer research community. The ICPV believes that clinical research is improved by patients being partners with healthcare professionals, rather than passive recipients of healthcare. Patient and public involvement (PPI) once seemed to be imposed on researchers, a box that needed ticking in order for a funding bid to be successful or for a trial to get the approval of an ethics committee. One or two patients might have been asked to give their approval for a study proposal, enabling researchers to say that patients had been involved in the research process. Over time, the ICPV found that some researchers began to recognise the value of quality PPI in the development of their research and started to involve patient groups at all stages of their research. The ICPVwas founded in 2009 as an independent patient advocate group. Through education, mentoring and support, the ICPV has expanded and nurtured its membership and gained the respect and trust of many researchers. Having been involved in the development of over 100 trials, ICPV members now represent lay people/patients on many trial management and steering groups. The ICPV has collaborated with researchers to deliver presentations at UK and international conferences. Workshops, trials focus groups and educational events have been hosted by academic centres across the UK.
منابع مشابه
Participatory Design; A New Approach to Regenerate the Public Space
The following study aims to present an innovative approach for Design. Participatory Design is the model of direct involvement of different social groups in the design from functional tools to environments, social institutions and businesses. Diverse collection of practices has been developed to support this direct involvement by Participatory Design. People are invited to participate during di...
متن کاملAn Untapped Resource: Patient and Public Involvement in Implementation; Comment on “Knowledge Mobilization in Healthcare Organizations: A View From the Resource-Based View of the Firm”
This commentary considers the potential role of patient and public involvement in implementation. Developing an analytical thread from the resource-based view of the Firm, we argue that this involvement may create unique resources that have the capacity to enhance the impact of implementation activity for healthcare organisations.
متن کاملConsumers or Citizens? Whose Voice Will Healthwatch Represent and Will It Matter?; Comment on “Challenges Facing Healthwatch, a New Consumer Champion in England”
Efforts to achieve effective and meaningful patient and public involvement (PPI) in healthcare have existed for nearly a century, albeit with limited success. This brief commentary discusses a recent paper by Carter and Martin exploring the “Challenges Facing Healthwatch, a New Consumer Champion in England,” and places these challenges in the context of the broader struggle to give a voice to h...
متن کاملDesigning a Development Strategy for the Public Sport – a Case Study in Mazandaran Province
The aim of this study was to design a development Strategy for the Public Sport in Mazandaran province. A sample of 73 individuals who were the physical education teachers of higher education institutions, senior managers of the department of the youth and sports, senior experts, heads of the state offices, provincial and municipal authorities and bodies of sports participated in this study. ...
متن کاملThe Why, Who, What, How, and When of Patient Engagement in Healthcare Organizations: A Response to Recent Commentaries
متن کامل
Bringing Value-Based Perspectives to Care: Including Patient and Family Members in Decision-Making Processes
Background Recent evidence shows that patient engagement is an important strategy in achieving a high performing healthcare system. While there is considerable evidence of implementation initiatives in direct care context, there is limited investigation of implementation initiatives in decision-making context as it relates to program planning, service delivery and developing policies. Research ...
متن کاملذخیره در منابع من
با ذخیره ی این منبع در منابع من، دسترسی به آن را برای استفاده های بعدی آسان تر کنید
عنوان ژورنال:
- Clinical oncology (Royal College of Radiologists (Great Britain))
دوره 27 12 شماره
صفحات -
تاریخ انتشار 2015