The ‘imperative’ of patient and public involvement (PPI) is acknowledged today more explicitly than ever by key stakeholders influencing the development, delivery and overseeing of health research and implementation in the UK. We see the BMJ’s recent editorial - titled “Let the Patient Revolution Begin” - as a welcome commitment of policy and intellectual resources to ‘engaging patients’; however we are wary of a rhetorical emphasis on ‘revolution’ that is supposedly needed in the field. Firstly, this acknowledgement comes years after patient involvement has been moved, both discursively and organizationally, to the centre of successive UK governments’ agendas, leading in 2006 to the establishment of INVOLVE, a dedicated national advisory group for supporting involvement in health research. As early as 2001 Hanley et al reported in the BMJ that user involvement throughout the cycle of clinical research is reorienting the clinical research agenda towards the patient interests.
The editorial also seems to overlook more than a decade of critique developed by health and social research into involvement, which has convincingly exposed the weaknesses of implementing the involvement agenda. For instance, Tallon et al (2000), writing in the Lancet, raise serious concerns that evidence-based research is becoming unrepresentative of patient needs, as researchers do not find ways to meaningfully involve service users in their projects.
Our own recent studies into the practical enactment of involvement in stroke research and care services (Komporozos-Athanasiou et al, 2011; McKevitt et al, 2010; Fudge et al, 2009) substantiate these concerns, showing the power shifts implicit in the ‘revolution rhetoric’ to be little more than an empty promise. Moreover, the kind of patient empowerment discussed in this editorial seems to reaffirm the mechanism of individual choice – a model of involvement that has been consistently challenged for being unable to represent lay interests (e.g. Martin, 2011; Barnes, 2008), contradicting the patient’s basic need for care (Henwood et al, 2011; Salander and Henriksson, 2005) and neglecting relationships of trust wherein responsibility and control may indeed be retained by the doctor/scientist/professional researcher (Wright et al, 2004). In response to the discourse of ‘patient revolution’, ‘empowerment’ and ‘informed choice’, our research suggests that it is essential to re-articulate the potential of patient involvement in terms that recognise the important relational nature and function of health systems. Effective and meaningful involvement requires the commitment of time in the development of relationships amongst the various stakeholders – it does not - and cannot - happen overnight; building an active community that engages in dialogue and shares problems takes time (Tritter, 2009; Mol, 2008; also see Komporozos-Athanasiou and Thompson, 2013).
References
Barnes, M. (2008). Passionate participation: Emotional experiences and expressions in deliberative forums. Critical social policy, 28(4), 461-481.
Fudge N, Wolfe C, McKevitt C. (2008). Assessing the promise of user involvement in health service development: ethnographic study. BMJ, 336, 313-317.
Hanley, B., Truesdale, A., King, A., Elbourne, D., & Chalmers, I. (2001). Involving consumers in designing, conducting, and interpreting randomised controlled trials: questionnaire survey. Bmj, 322(7285), 519-523.
Henwood, F., Harris, R., & Spoel, P. (2011). Informing health? Negotiating the logics of choice and care in everyday practices of ‘healthy living’. Social Science & Medicine, 72(12), 2026-2032.
Komporozos-Athanasiou, A., Oborn, E., Barrett, M., & Chan, Y. E. (2011). Policy as a struggle for meaning: disentangling knowledge translation across international health contexts. Knowledge Management Research & Practice, 9(3), 215-227.
Komporozos-Athanasiou, A. and Thomspon, M. Does the Department of Health hear patient opinions? The Guardian, (02.07.13)
Martin, G. P. (2011). The third sector, user involvement and public service reform: a case study in the co-governance of health service provision. Public Administration, 89(3), 909-932.
McKevitt C, Fudge N, Wolfe C. (2010). What is involvement in research and what does it achieve? Reflections on a pilot study of the personal costs of stroke. Health Expectations, 14, 349–356.
Mol, A. (2008). The logic of care: Health and the problem of patient choice. Routledge.
Salander, P., & Henriksson, R. (2005). Severely diseased lung cancer patients narrate the importance of being included in a helping relationship. Lung cancer, 50(2), 155-162.
Tallon, D., Chard, J., & Dieppe, P. (2000). Relation between agendas of the research community and the research consumer. The Lancet, 355(9220), 2037-2040.
Tritter, J. Q. (2009). Revolution or evolution: the challenges of conceptualizing patient and public involvement in a consumerist world. Health Expectations, 12(3), 275-287.
Wright, E. B., Holcombe, C., & Salmon, P. (2004). Doctors' communication of trust, care, and respect in breast cancer: qualitative study. Bmj, 328(7444), 864.
Competing interests:
No competing interests
18 September 2013
Aris Komporozos-Athanasiou
Research Associate in Social Science
Christopher McKevitt, Reader in Social Sciences and Health
Rapid Response:
Re: Let the patient revolution begin
The ‘imperative’ of patient and public involvement (PPI) is acknowledged today more explicitly than ever by key stakeholders influencing the development, delivery and overseeing of health research and implementation in the UK. We see the BMJ’s recent editorial - titled “Let the Patient Revolution Begin” - as a welcome commitment of policy and intellectual resources to ‘engaging patients’; however we are wary of a rhetorical emphasis on ‘revolution’ that is supposedly needed in the field. Firstly, this acknowledgement comes years after patient involvement has been moved, both discursively and organizationally, to the centre of successive UK governments’ agendas, leading in 2006 to the establishment of INVOLVE, a dedicated national advisory group for supporting involvement in health research. As early as 2001 Hanley et al reported in the BMJ that user involvement throughout the cycle of clinical research is reorienting the clinical research agenda towards the patient interests.
The editorial also seems to overlook more than a decade of critique developed by health and social research into involvement, which has convincingly exposed the weaknesses of implementing the involvement agenda. For instance, Tallon et al (2000), writing in the Lancet, raise serious concerns that evidence-based research is becoming unrepresentative of patient needs, as researchers do not find ways to meaningfully involve service users in their projects.
Our own recent studies into the practical enactment of involvement in stroke research and care services (Komporozos-Athanasiou et al, 2011; McKevitt et al, 2010; Fudge et al, 2009) substantiate these concerns, showing the power shifts implicit in the ‘revolution rhetoric’ to be little more than an empty promise. Moreover, the kind of patient empowerment discussed in this editorial seems to reaffirm the mechanism of individual choice – a model of involvement that has been consistently challenged for being unable to represent lay interests (e.g. Martin, 2011; Barnes, 2008), contradicting the patient’s basic need for care (Henwood et al, 2011; Salander and Henriksson, 2005) and neglecting relationships of trust wherein responsibility and control may indeed be retained by the doctor/scientist/professional researcher (Wright et al, 2004). In response to the discourse of ‘patient revolution’, ‘empowerment’ and ‘informed choice’, our research suggests that it is essential to re-articulate the potential of patient involvement in terms that recognise the important relational nature and function of health systems. Effective and meaningful involvement requires the commitment of time in the development of relationships amongst the various stakeholders – it does not - and cannot - happen overnight; building an active community that engages in dialogue and shares problems takes time (Tritter, 2009; Mol, 2008; also see Komporozos-Athanasiou and Thompson, 2013).
References
Barnes, M. (2008). Passionate participation: Emotional experiences and expressions in deliberative forums. Critical social policy, 28(4), 461-481.
Fudge N, Wolfe C, McKevitt C. (2008). Assessing the promise of user involvement in health service development: ethnographic study. BMJ, 336, 313-317.
Hanley, B., Truesdale, A., King, A., Elbourne, D., & Chalmers, I. (2001). Involving consumers in designing, conducting, and interpreting randomised controlled trials: questionnaire survey. Bmj, 322(7285), 519-523.
Henwood, F., Harris, R., & Spoel, P. (2011). Informing health? Negotiating the logics of choice and care in everyday practices of ‘healthy living’. Social Science & Medicine, 72(12), 2026-2032.
Komporozos-Athanasiou, A., Oborn, E., Barrett, M., & Chan, Y. E. (2011). Policy as a struggle for meaning: disentangling knowledge translation across international health contexts. Knowledge Management Research & Practice, 9(3), 215-227.
Komporozos-Athanasiou, A. and Thomspon, M. Does the Department of Health hear patient opinions? The Guardian, (02.07.13)
Martin, G. P. (2011). The third sector, user involvement and public service reform: a case study in the co-governance of health service provision. Public Administration, 89(3), 909-932.
McKevitt C, Fudge N, Wolfe C. (2010). What is involvement in research and what does it achieve? Reflections on a pilot study of the personal costs of stroke. Health Expectations, 14, 349–356.
Mol, A. (2008). The logic of care: Health and the problem of patient choice. Routledge.
Salander, P., & Henriksson, R. (2005). Severely diseased lung cancer patients narrate the importance of being included in a helping relationship. Lung cancer, 50(2), 155-162.
Tallon, D., Chard, J., & Dieppe, P. (2000). Relation between agendas of the research community and the research consumer. The Lancet, 355(9220), 2037-2040.
Tritter, J. Q. (2009). Revolution or evolution: the challenges of conceptualizing patient and public involvement in a consumerist world. Health Expectations, 12(3), 275-287.
Wright, E. B., Holcombe, C., & Salmon, P. (2004). Doctors' communication of trust, care, and respect in breast cancer: qualitative study. Bmj, 328(7444), 864.
Competing interests: No competing interests