Josephine Ocloo first got into patient involvement, as a grieving mother following the death of her 17-year old daughter, who died as a result of a failure to manage her heart condition. Not getting answers on her daughter’s care on why failures occurred and her quest for justice, led to Josephine getting involved in patient safety as a campaigner and patient activist, wanting to change the system and make it safer.
"I gradually became involved in all aspects of patient safety – chairing committees and undertaking a PhD which looked at patient safety incidents from the standpoint of those directly affected. I am currently a member of the Learning from Deaths Partnership Board, set up by the Secretary of State for Health in the wake of the Southern Health failings, as well conducting research at King’s College London, in the Centre for Implementation Science.
What I bring to all of this – as well as my personal experience – is learning from my professional background in social science. I have always been passionate about creating a society that is based upon social equality, non-discrimination and justice.
Over the years, I have seen projects where patient/public involvement (PPI) has been tokenistic, lacking in inclusivity and ill thought through in terms of the objectives of the work. At the heart of these problems is the question of whether we take a rights-based or a managerial approach to PPI.
Disenfranchised groups, including black, disabled, mental health, LGBT, and women’s groups, can be seen as providing collective challenges to poor care, discriminatory/paternalistic services, and medical policy and belief systems. Campaigns from patients who have been harmed, and their relatives, are another example of rights-based challenges to paternalistic healthcare. Current models of PPI however, are often rooted in a mechanistic and professionally dominated approach.
This narrow “managerialist” or “consumerist” model has its roots in market research and “improving the product”. It mainly draws upon data collection and consultation and the reporting of patient survey results at board meetings.
This contrasts with a rights-based approach, which emphasises the direct involvement and empowerment of service users, and broader democratisation at a community level. Such an approach recognises the systemic nature of health inequities and focuses on the need for change within social systems as well as within individuals and services.
Power imbalances in PPI can be reinforced by the question of who to involve. For example, patient representatives are less commonly drawn from Black, Asian and Minority Ethnic (BAME) groups, yet in the UK it is acknowledged that BAME populations experience poorer health and barriers to accessing certain services.
Narrow PPI selection processes mean that those with most to gain are most excluded from healthcare decision making. This restricts the pool of ideas for improvement and limits the opportunity to break cycles of suboptimal care and services.
To move beyond current PPI approaches, we need to address imbalances of power between patients, public and healthcare professionals. We need better evaluation, to understand the effectiveness of PPI methods, and how inclusive they are. And ultimately, we need better training of staff, within organisational contexts where partnership working with a diversity of patients and public is clear, embedded and normal.”
See the full published article ‘From tokenism to empowerment: progressing patient and public involvement in healthcare improvement in BMJQS)
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