The added value of patient organisations | The European Patients Forum
The objective of this report is to emphasise the contribution of patient organisations in representing and voicing the situation of a specific population that would otherwise not be represented.
Patient organisations are able to help policy-makers understand the experience of living with a disease or a condition. They use this ‘end-user perspective’ to promote the interests of patients at all stages of policy development and in a range of institutional settings.
The main activities of patient organisations are set out in four different areas: policy, capacity building and education, peer support and research & development (both health and pharmaceutical).
Although conceptual definitions of person-centred care (PCC) vary, most models value the involvement of patients through patient-professional partnerships | BMJ Open
Objective: While this may increase patients’ sense of responsibility and control, research is needed to further understand how this partnership is created and perceived. This study aims to explore the realities of partnership as perceived by patients and health professionals in everyday PCC practice.
Conclusions: In our study, patients appear to value a process of human connectedness above and beyond formalised aspects of documenting agreed goals and care planning. PCC increases patients’ confidence in professionals who are competent and able to make them feel safe and secure. Informal elements of partnership provide the conditions for communication and cooperation on which formal relations of partnership can be constructed.
Patients are increasingly being asked for feedback about their healthcare experiences. However, healthcare staff often find it difficult to act on this feedback in order to make improvements to services | Social Science and Medicine
This paper draws upon notions of legitimacy and readiness to develop a conceptual framework (Patient Feedback Response Framework – PFRF) which outlines why staff may find it problematic to respond to patient feedback.
A large qualitative study was conducted with 17 ward based teams between 2013 and 2014, across three hospital Trusts in the North of England. This was a process evaluation of a wider study where ward staff were encouraged to make action plans based on patient feedback.
Through the development of the PFRF, we found that making changes based on patient feedback is a complex multi-tiered process and not something that ward staff can simply ‘do’.
First, staff must exhibit normative legitimacy – the belief that listening to patients is a worthwhile exercise.
Second, structural legitimacy has to be in place – ward teams need adequate autonomy, ownership and resource to enact change. Some ward teams are able to make improvements within their immediate control and environment.
Third, for those staff who require interdepartmental co-operation or high level assistance to achieve change, organisational readiness must exist at the level of the hospital otherwise improvement will rarely be enacted.
Case studies drawn from our empirical data demonstrate the above. It is only when appropriate levels of individual and organisational capacity to change exist, that patient feedback is likely to be acted upon to improve services.
The two sets of guidance, and a wealth of web based resources and best practice, together supersede the original ‘Transforming Participation in Health and Care’ guidance, which was published in 2013 | NHS England
In response to user feedback, elements of the original guidance have been retained and new features introduced, including a greater focus on people with the greatest health needs, and information on the practicalities of involvement.
The links between individual and collective involvement in health are clear; people who have advanced knowledge, skills and confidence to manage their own health are more likely to get involved at a group/community level in having a say about health and health services. Equally, those who have been involved in the commissioning process (planning, buying and monitoring) health services are more likely to be informed about health and health services; they will therefore be better placed to manage their own health and be involved about decisions relating to their care and treatment.
Patient stories are a raw and compelling new kind of online feedback. They can prompt rapid improvements in services – if the NHS is willing to embrace them | The Guardian Healthcare Network
People have always shared their experiences of healthcare, usually privately, with family, neighbours or workmates. But online, patients and carers are increasingly willing to share accounts of their health service encounters with the wider world, often in intimate detail. There are websites devoted to collecting and publicising patient ratings and reviews of healthcare professionals, services, diagnoses and treatments.
The stories of patients and carers are becoming an unavoidable part of modern healthcare. In the US, people searching online for information about local services are more likely to read patient comments than official clinical outcome measures or patient experience metrics. In the UK, staff routinely read online patient feedback and share it on social media. NHS regulators have even started to think in terms of monitoring and analysing patient stories to provide an “early warning” for when things might be going wrong.
Hung, L. et al. International Journal of Older People Nursing. Published online: 18 April 2017
Background: Recognising demographic changes and importance of the environment in influencing the care experience of patients with dementia, there is a need for developing the knowledge base to improve hospital environments. Involving patients in the development of the hospital environment can be a way to create more responsive services. To date, few studies have involved the direct voice of patients with dementia about their experiences of the hospital environment.
Conclusions: Patient participants persuasively articulated the supportive and unsupportive elements in the environment that affected their well-being and care experiences. They provided useful insights and pointed out practical solutions for improvement. Action research offers patients not only opportunities to voice their opinion, but also possibilities to contribute to hospital service development.