Article type
Abstract
Background
The National Institute for Health and Care Excellence (NICE) systematically involves patients, carers, and the community in the development of our guidance. These experts with lived experience are currently referred to as lay members by NICE. Their voices, perspectives, and needs are central to everything we do.
NICE was commissioned by NHS England to develop patient decision aids (PDAs) for 6 topics. A PDA (also sometimes referred to as a "decision support tool") aims to help people facing a decision about treatment or care options (and their family and carers, as appropriate) make an informed choice based on which of the advantages and disadvantages of their available treatment or care options matter most to them.
Objectives
To share good practice around the involvement of people with lived experience in developing PDAs.
Methods
NICE’s Public Involvement Programme was integral to developing the methodology for patient involvement in these PDAs. We worked with our colleagues in the NICE Medicines Optimization team to identify lay members and involve them from the outset of the work. This meant that their voices were central to the way we conceptualized and shaped the final PDAs.
We ensured that the lay members were adequately trained, supported, and compensated for their time and valued expertise. We also facilitated user testing of the draft PDAs with wider stakeholders in the voluntary and community sector when possible.
Results
Involving lay members in this work as equals has demonstrated and reinforced the importance of NICE’s core purpose of putting users at the center of everything we do.
Conclusions
We are excited to share our evaluation of lay-member feedback around their involvement, looking at and sharing best practice for future PDAs.
We will also look at the uptake of these PDAs once they are published to facilitate shared decision-making that will ultimately improve the quality of patient experience.
The National Institute for Health and Care Excellence (NICE) systematically involves patients, carers, and the community in the development of our guidance. These experts with lived experience are currently referred to as lay members by NICE. Their voices, perspectives, and needs are central to everything we do.
NICE was commissioned by NHS England to develop patient decision aids (PDAs) for 6 topics. A PDA (also sometimes referred to as a "decision support tool") aims to help people facing a decision about treatment or care options (and their family and carers, as appropriate) make an informed choice based on which of the advantages and disadvantages of their available treatment or care options matter most to them.
Objectives
To share good practice around the involvement of people with lived experience in developing PDAs.
Methods
NICE’s Public Involvement Programme was integral to developing the methodology for patient involvement in these PDAs. We worked with our colleagues in the NICE Medicines Optimization team to identify lay members and involve them from the outset of the work. This meant that their voices were central to the way we conceptualized and shaped the final PDAs.
We ensured that the lay members were adequately trained, supported, and compensated for their time and valued expertise. We also facilitated user testing of the draft PDAs with wider stakeholders in the voluntary and community sector when possible.
Results
Involving lay members in this work as equals has demonstrated and reinforced the importance of NICE’s core purpose of putting users at the center of everything we do.
Conclusions
We are excited to share our evaluation of lay-member feedback around their involvement, looking at and sharing best practice for future PDAs.
We will also look at the uptake of these PDAs once they are published to facilitate shared decision-making that will ultimately improve the quality of patient experience.