Developing an evidence base for patient and public involvement

Abstract

This paper summarises five years' experience of patient and public involvement in primary care, citing examples from the Lanark practice and Clydesdale Local Health Care Co-operative (LHCC) in Lanarkshire, Scotland. Strategic development and models which align primary care structures within a framework for patient and public involvement are described, along with barriers to implementation. Examples derived from clinical governance, health promotion and needs assessment include patient and carer involvement in significant event analysis and audit, joint training and patient-held record cards. Positive outcomes reported are effective dialogue between health professionals, patients and the public, service developments and quality improvements. The success of initiatives is retrospectively assessed against the Audit Commission's critical success factors.

Sidestepping questions of legitimacy: How community representatives manoeuvre to effect change in a health service

“…CRep influence on the design of new services or delivery of clinical care is less commonly found (Crowley et al, 2002;Murie and Douglas-Scott, 2004;Nathan et al, 2010;Sitzia et al, 2006). There is little evidence of CRep impact where clinical or quality of care is the central focus (Braithwaite et al, 2010;Pickard et al, 2002;Van Wersch and Eccles, 2001).…”

From awareness to involvement? A qualitative study of respiratory patients’ awareness of health service change

“…Although studies have explored the potential benefits of patient and public involvement in improving service design and shaping priorities, 14–17 there is still limited empirical evidence to support the effectiveness of these initiatives 18–21 . Structural barriers to public participation have been highlighted and include uncertainty over the practicalities of promoting patient involvement, 22–25 the precise role the public should play, 26 poorly resourced integration into systems for service improvement, 27 and professional attitudes to patient involvement 28–31 …”

“…[18][19][20][21] Structural barriers to public participation have been highlighted and include uncertainty over the practicalities of promoting patient involvement, [22][23][24][25] the precise role the public should play, 26 poorly resourced integration into systems for service improvement, 27 and professional attitudes to patient involvement. [28][29][30][31] A commonly cited concern is that patientsÕ knowledge and awareness focus predominantly on their personal elements of care, with few patients having the awareness and ⁄ or motivation to understand the broader perspectives required for involvement in strategic health service planning. 32,33 Using respiratory disease as an exemplar long-term condition, our ethnographic study explored the processes of workforce change in four Primary Care Organizations (PCOs) responsible for delivering local health-care services, 34 and revealed pertinent insights into patientsÕ awareness, knowledge and interest in the health services and how professionals feel about engaging with patients.…”

Setting priorities for high-cost medications in public hospitals in Australia: should the public be involved?

“…16 Some of the barriers to public involvement include: inadequate time for consultation; inadequate community infrastructure and knowledge; lack of resources and managerial skills. 17,18 However, citizens can bring different knowledge to the decision-making process, 19 as the values and preferences of members of the general public differ from those of healthcare professionals. [20][21][22] The question can be asked: 'Is there is a place for citizen involvement in priority setting for HCMs at the public hospital level?'…”