1.5 - Principles to guide project planning
A Delphi study identified the principles for patient and public involvement (Telford et al 2004, ref. 16 ). This section draws on these principles and suggests how they might be translated into practice.
In practice:
The roles of service users in the research need to be documented. Such documentation can be used to recruit service users and ensure they are clear about how their roles fit into the wider purpose and procedures. Service users may play a part in defining their roles through discussion in advance, or reflecting on the experience.
Researchers budget appropriately for the costs of patient and public involvement in research
In practice:
The HTA programme encourages research teams to apply for funding for patient and public involvement in the research, particularly for travel costs and other relevant costs (e.g. carer costs).
Researchers respect and publicly acknowledge the differing skills, knowledge and experience of service users
In practice:
Researchers can acknowledge contributions of service users’ skills, knowledge and experience in research reports and papers.
Service users are offered training and personal support, to enable them to be involved in research
In practice:
Researchers and service users need to discuss and agree the training needed in order for service users to make useful contributions.
Service users may also benefit from mentors offering personal and technical support.
Researchers ensure that they have the necessary skills to involve service users in the research process
In practice:
Researchers must ensure their own training needs are met in relation to public involvement in the research.
Service users are involved in decisions about how participants are both recruited and kept informed about the progress of the research
In practice:
Service users can advise researchers on how to recruit participants to the research, and on how to keep participants informed about the progress of the research.
Patient and public involvement is described in research reports
In practice:
Service users may be co-authors of reports or papers, or be acknowledged for their contributions. Research reports and publications are more informative if they describe how service users were involved in the research process and what contributions they made.
Research findings are available to service users, in formats and in languages they can easily understand
In practice:
Research findings can be disseminated to service users involved in the research in a range of appropriate formats (e.g. large print, translations, audio, Braille). Research findings can also be shared with relevant service user groups in appropriate formats and easily understandable language. Service users can offer advice on the choice of methods used to distribute the research findings.
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