Patient and Public Involvement and Engagement Plan 2018/19

Patient and Public Involvement and Engagement Plan 2018/19 | National Institute for Health Research

The National Institute for Health Research (NIHR) has published Patient and public involvement and engagement plan 2018/19.  This document sets out NIHR plans for working with patients, carers and the public to improve the quality and relevance of the research they commission and to raise public awareness of research.

In 2017, five national priorities for involvement and engagement in research were  identified as the focus for NIHR-wide delivery over the next 12 to 18 months. This plan reflects those national priorities and they are:

  • Voice: To ensure patients, carers and the public have a voice in how the NIHR works
  • Feedback: To ensure patients, carers and the public get feedback on how they have made a difference
  • Standards:  To define what good public involvement and engagement looks like
  • Impact / Getting results: To understand and show the impact of public involvement and engagement
  • Invention:  To test new ideas in public involvement and engagement and share the learning

Full document: Patient and Public Involvement and Engagement Plan 2018/19

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National standards for public involvement in research

New national standards launched across the UK to improve public involvement in research | National Institute for Health Research

A set of national standards designed to improve the quality and consistency of public involvement in research has been launched at the 2018 Patients First conference and at the Involving People Network Annual Meeting 2018.

The standards aim to provide people with clear, concise benchmarks for effective public involvement alongside indicators against which improvement can be monitored. They are intended to encourage approaches and behaviours that will support this.

They have been developed through a UK-wide partnership over the last 18 months building on previous work in this area. The partnership brings together members of the public with representatives from the National Institute for Health Research (England), the Chief Scientist Office (Scotland), Health and Care Research Wales and the Public Health Agency (Northern Ireland), working with an independent expert.

Full details at National Institute for Health Research

Communities and health

 

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This resource provides an overview of the different approaches to working with communities for improving health and illustrates the vital role that they have in improving health and wellbeing. The Kings Fund has produced this reading list for those who want to explore the topic of communities and health in more detail. 

The following questions and areas are examined:

  • What is a ‘community’?
  • What is the role of communities in improving health?
  • Health policy and the role of communities in health
  • Examples of community involvement in health

Full resource: Communities and Health | The Kings Fund

The value of patient organisations

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.

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Image source: http://www.eu-patient.eu

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).

Full report: The added value of patient organisations

Measuring quality of health care in the NHS: Giving a voice to the patients

The high profile role that the NHS played in Brexit and recent general election campaigns demonstrates that the health care system remains foremost in the minds of all political parties when considering how to present their policies | The Health Foundation

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These campaigns put a spotlight on the sustainability of the health care system, but may have also fuelled a fear over deteriorating health system performance. In 2017, the NHS was recently ranked by the Commonwealth Fund as the best performing health care system out of 11 countries, including Germany, Australia and the United States. However, 82% of the general public expressed concerns about the future of the NHS in a survey following the 2017 General Election, with quality of care identified as one reason for dissatisfaction previously. Arguably, this disparity may be the result of intense media coverage of the human and financial pressures on the NHS, which could have shaped public perception to some extent. However, it might also point to a deeper disparity: a disconnect between the general assessment of measurable health system performance versus the quality of care perceived by patients when accessing the NHS.

One reason for this relates to the difficulty in measuring quality of health care at the system level. Quality in the context of health care is a multi-dimensional framework that captures six domains:

  • Effectiveness
  • Efficiency
  • Equity
  • Safety
  • Timeliness
  • Patient-centeredness.

Read the full blog post by Rocco Friebel here

A Multifaceted Intervention to Improve Outcomes in Intensive Care

This study examines the effectiveness of a patient-centered care and engagement program in the medical ICU | Critical Care Medicine

Interventions: Structured patient-centered care and engagement training program and web-based technology including ICU safety checklist, tools to develop shared care plan, and messaging platform. Patient and care partner access to online portal to view health information, participate in the care plan, and communicate with providers.

Measurements and Main Results: Primary outcome was aggregate adverse event rate. Secondary outcomes included patient and care partner satisfaction, care plan concordance, and resource utilization. We included 2,105 patient admissions, (1,030 baseline and 1,075 during intervention periods). The aggregate rate of adverse events fell 29%, from 59.0 per 1,000 patient days (95% CI, 51.8-67.2) to 41.9 per 1,000 patient days (95% CI, 36.3-48.3; p < 0.001), during the intervention period. Satisfaction improved markedly from an overall hospital rating of 71.8 (95% CI, 61.1-82.6) to 93.3 (95% CI, 88.2-98.4; p < 0.001) for patients and from 84.3 (95% CI, 81.3-87.3) to 90.0 (95% CI, 88.1-91.9; p < 0.001) for care partners. No change in care plan concordance or resource utilization.

Conclusions: Implementation of a structured team communication and patient engagement program in the ICU was associated with a reduction in adverse events and improved patient and care partner satisfaction.

Full reference: Dykes, P. et al. (2017) Prospective Evaluation of a Multifaceted Intervention to Improve Outcomes in Intensive Care: The Promoting Respect and Ongoing Safety Through Patient Engagement Communication and Technology Study. Critical Care Medicine. Published online: 3rd May 2017