Patient and public involvement in translative healthcare research

Purpose – This paper aims to set out a framework that can be used for locating strategies for incorporating patient and public involvement (PPI) in the wider process of translative healthcare research.Design/methodology/approach – This paper is analytical and synthesizes knowledge from several disciplines in order to provide a coherent framework for understanding the scope and purpose of PPI. The framework sets out four idealised strategies for PPI based on mode and purpose of involvement. The paper concludes by summarising a range of implications for organisations involved in the governance of translative healthcare research.Findings – The framework defines four idealised strategies for PPI in translative healthcare research. The strategies range in purpose from collecting patient data, through to improving public involvement and knowledge with respect to healthcare research.Practical implications – The framework presented has direct relevance for agencies concerned with the management and governance of ...

[1]  Roy Rothwell,et al.  Developments towards the fifth generation model of innovation , 1992 .

[2]  Nick Black,et al.  The Cooksey review of UK health research funding , 2006, BMJ : British Medical Journal.

[3]  W. Sykes,et al.  Consulting the public about health service priorities , 1995, BMJ.

[4]  Henry Chesbrough,et al.  Open Innovation: The New Imperative for Creating and Profiting from Technology , 2003 .

[5]  B. Biesecker,et al.  Community involvement in developing policies for genetic testing: assessing the interests and experiences of individuals affected by genetic conditions. , 2005, American journal of public health.

[6]  Paul Nightingale,et al.  The new inventors: how users are changing the rules of innovation , 2008 .

[7]  Christopher Lettl,et al.  Exploring How Lead Users Develop Radical Innovation: Opportunity Recognition and Exploitation in the Field of Medical Equipment Technology , 2008, IEEE Transactions on Engineering Management.

[8]  G. Eysenbach.  Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness , 2008, Journal of medical Internet research.

[9]  P. Reason.  Integrating Action and Reflection Through Co-Operative Inquiry , 1999 .

[10]  S. Mazzocchi.  Open Innovation: The New Imperative For Creating and Profiting From Technology , 2004 .

[11]  J. Frost,et al.  Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data , 2008, Journal of medical Internet research.

[12]  P. Dibben,et al.  Local Government and Service Users: Empowerment through User-Led Innovation? , 2001 .

[13]  R. Hughes.  The NHS Constitution , 2009 .

[14]  Edgar H. Schein,et al.  Clinical Inquiry/Research , 2008 .

[15]  John Cullen,et al.  Democratizing Innovation , 2020, Encyclopedia of Creativity, Invention, Innovation and Entrepreneurship.

[16]  G. I. Kustova,et al.  From the author , 2019, Automatic Documentation and Mathematical Linguistics.

[17]  Peter Park,et al.  People, Knowledge, and Change in Participatory Research , 1999 .

[18]  B. Israel,et al.  Methods in Community-Based Participatory Research for Health , 2005 .

[19]  O. Fals-Borda,et al.  Action and Knowledge: Breaking the Monopoly With Participatory Action Research , 1991 .

[20]  Sandy Oliver,et al.  Involving the public in NHS public health, and social care research: briefing notes for researchers , 2004 .

[21]  G. Teasdale.  Learning from Bristol: report of the public inquiry into children's heart surgery at Bristol Royal Infirmary 1984-1995 , 2002, British journal of neurosurgery.

[22]  P. Reason,et al.  A Participatory Inquiry Paradigm , 1997 .

[23]  J. Eyles,et al.  Deliberations about deliberative methods: issues in the design and evaluation of public participation processes. , 2003, Social science & medicine.