Suchergebnisse

Abstract
We (both author and reader) will explore the need to develop a practicable evaluative human rights-based approach to the care, treatment and discharge of forensic mental health patients. It can be argued that patients in secure and forensic services are potentially the most marginalised and extensively stigmatised of all patient cohorts, and that the extent to which they are discriminated against should not be underestimated. We will consider the concept of right-based practice in secure and forensic mental health settings, and how the quality of practice can be strengthened. We will ground our exploration in the lived experiences of secure and forensic mental health patients and seek through the lens of lived experience to envisage what could constitute fairer and more supportive systems of care.

BackgroundAs commissioners of the National Clinical Audit and Patient Outcomes Programme (NCAPOP), HQIP are custodians of data from across many areas of healthcare. The high quality and national coverage of circa 40 national audits and registries means datasets are sought after for many purposes.
IntroductionHQIP values placing patients and the public at the heart of our work. We wanted to work with members of our Service User Network (SUN) to research and design how to recruit and sustain public representation in our Data Access Request Group (DARG).
Our primary objective was to work in partnership with public members to co-design a sustainable model that implements meaningful public involvement within DARG.
Our intended outcomes were that HQIP is enabled to establish public membership in DARG, and that HQIP's Data Access processes benefit from the added supportive challenge and assurance that public membership provides.
MethodsWe took the following steps to achieve our aims:

Recruited 3 public members to our project team from our SUN enabling us to have meaningful public involvement throughout.Public members contributed to discussions with other organisations with established public membership on their data access committees (IGARD, CPRD, Pioneer) and HDRUK, to gather knowledge on best practice in public engagement with data access processes.
Fortnightly team meetings to review progress, develop a model for public membership in DARG, and reflect on learnings throughout.
Invited our public members to observe a DARG meeting to better understand how our data access processes work, and followed this up with a Q&A session.
Our PPI lead actively supported public members throughout the project, enabling them to self-select how they wanted to contribute, and encouraging them to bring learning from other PPI work they have been involved with.

ResultsOur project outputs included:

A costed business case for establishing public membership within DARG: for HQIP reviewRecruitment resources: promotional materials, role description for public members, public involvement agreement, draft interview tasks and questions
DARG operating model: amended DARG Terms of Reference, Glossary of terms
Co-designed webpages: on HQIP's Data Access Processes; inclusion of the Five Safes Framework
Supporting infographics: to visually display webpage content

ConclusionsThis project had the following impact and gave the following insights:

HQIP approval given for establishing public membership onto DARG
Improved public accessibility and understanding of HQIP's data access processes
Clearer roles and responsibilities of DARG members
A platform within DARG to promote the patient and public voice
Learning for HQIP as it was the first-time public members were part of a project team – this brought diversity, new ideas, and challenge
Public project members more confident to challenge and question professionals in other settings

ObjectivesPublic involvement and engagement (PIE) is playing an increasingly important role in big data initiatives and projects. It is therefore important to gain a deeper understanding of the different approaches used.
ApproachThis study explores PIE using ethnographically-informed qualitative case studies. The case studies include: three citizen juries, each one carried out over eight days and that asked jurors to consider different real-world health data initiatives; and a public panel set up by a regional databank that carries out data linking. Data collection is ongoing and I will be continuing to carry out close observations of activities, and conducting semi-structured 1:1 interviews with those that organise and have taken part in the activities.
ResultsData collection so far comprises completed observations at the citizen juries (~96 hours), ongoing observations of the public panel meetings (~15 hours), and thirty semi-structured 1:1 interviews with public contributors and other stakeholders about their experiences of the activities they were involved in. Early data analysis indicates key themes of: jurors feeling heard, but unsure whether anybody was listening; stakeholders being impressed by informed jurors, but raising concerns over contributors becoming too 'expert'; how who is at the table and what information is presented impacts what is discussed; differences between online and in-person participation; and public involvement not being a substitute for informing the public about how their data is used.
Conclusion'Who' is involved, and 'how' PPIE activities are designed and run can facilitate or constrain discussion, enhancing or limiting public contributions. If public involvement is to achieve its aims, including increasing trustworthiness, deeper consideration of these factors by those who seek the public's views in their data projects is recommended.

The UK's National Health Service (NHS) generates uniquely rich data that should be rapidly deployed for policy and service improvement, yet researchers report difficulties in accessing these data. Paradoxically, these restrictions are occurring at the same time as the open science movement, which encourages data sharing to improve the rigour, transparency, and replicability of research. We describe the urgency of improvements to data access and propose solutions from a mental health research perspective, although the issues discussed extend to all areas in which analysis and linkage of health data support policy and practice. Actions are needed at every level, from data users and data custodians to government (panel).