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Definitions

PPI is the proper term for lay involvement in healthcare research, though its translation to words varies significantly. For instance, we find “patients’ and public involvement” and “patient/public involvement” among five or six other versions. There is much confusion, some have argued intentional^{[citation needed]}, about what specifically this term means: who is included, and how.^{[citation needed]}

The 'patient' in PPI

The word “patients” appears explicitly because involving people with a specific health condition or care situation in research into that condition or situation demonstrably improves research^{[citation needed]}. People who have recovered and are no longer patients still have valuable knowledge and understanding of that condition, so are included.

Therefore, “patients” has come to mean: patients, and ex-patients, as well as carers, ex-carers and relatives of patients.

In some cases 'potential patients' have been included, though how this group differs from 'public' is unclear.

Patient Voice^[1]

The 'public' in PP

Alternative Terminology

Involvement

Democratic approaches to involvement

Democratic approaches to involvement are favoured by service users, and are founded on the basis of redistribution of power, seeing

Active participant not passive recipient.

Reclaiming power for previously disempowered and infantilised individuals, namely those with

Consumerist approaches to involvement

Consumerism is marked by managerialism, consultation

Effectiveness, Efficiency

History

Origins

In the UK, there has been a historic push towards public involvement in policy, particularly in the realm of health and social care which can be dated back to community development initiatives in the 1960s. During the 1990s, with the rise of neoliberal approaches to economics and social care,

Health social movements contributed heavily to the development and implementation of PPI, namely the psychiatric survivor movement, disability rights movement, HIV/AIDS movement, among others.^[2]

Evolution

Alternative forms of involving service users in research

The Dutch have developed their own approach to service user involvement known as the Amsterdam Model

User-led research

Survivor research or user-controlled research

Organisations

NSUN

Service User Research Enterprise

INVOLVE

SureSearch

SURGE

^ Campbell, Jean (2009). "Methods: 'We are the Evidence,' an examination of service user research involvement as voice". In Wallcraft, Jan; Schrank, Beate; Amering, Michaela (eds.). Handbook of Service User Involvement in Mental Health Research. John Wiley & Sons. Ltd. pp. 114–137.
^ Beresford, Peter (2002/04). "User Involvement in Research and Evaluation: Liberation or Regulation?". Social Policy and Society. 1 (2): 95–105. doi:10.1017/s1474746402000222. ISSN 1475-3073. {{cite journal}}: Check date values in: |date= (help)

[1] Campbell, Jean (2009). "Methods: 'We are the Evidence,' an examination of service user research involvement as voice". In Wallcraft, Jan; Schrank, Beate; Amering, Michaela (eds.). Handbook of Service User Involvement in Mental Health Research. John Wiley & Sons. Ltd. pp. 114–137.

[2] Beresford, Peter (2002/04). "User Involvement in Research and Evaluation: Liberation or Regulation?". Social Policy and Society. 1 (2): 95–105. doi:10.1017/s1474746402000222. ISSN 1475-3073. {{cite journal}}: Check date values in: |date= (help)

[1]