Viewing involvement as living can improve PPI processes over time
Although living guideline developers should aim to meet the fundamentals of good practice in PPI from the start, living guidelines offer a chance to continually improve how PPI is done. Clarifying from the beginning that the involvement is living can help all contributors to expect that it will grow over time. ALEC has found that if members view their involvement as living, it allows improvements in the processes while building mutual respect.
Evaluating PPI in living guidelines
Living guidelines provide an excellent opportunity to improve PPI by evaluating how patient and public members (and other guideline contributors) experience the process. Like evaluation in conventional guideline development, this can include seeking feedback informally, inviting patient and public members to share any feedback directly over email or in one-to-one meetings, or anonymously through a brief online survey. More formal process evaluations can include surveys and interviews with external evaluators.
Creating feedback and evaluation opportunities for both patient and public members and staff can help to develop an understanding of what works or what needs to improve. For example, it can be an opportunity for staff to share examples of what effect patient and public members have had, which can improve confidence and create a sense of feeling valued.
Whatever the methods used, patient and public members should be involved in planning the evaluation, and the guideline development team must commit to addressing the feedback received, using a continuous improvement loop. The case studies from ALEC in the rest of this section highlight some informal and formal evaluation approaches used for living guidelines.
Case study: Informal feedback in 2 living guidelines
LEAPP informal evaluation
For the LEAPP Pregnancy and postnatal care guidelines, 17 patient and public members (16 Consumer Panel members and 1 Steering Group member) are part of the multidisciplinary expert panels. From the beginning, the LEAPP team collected anonymous feedback after every 3-monthly meeting through an online survey. Recently, this changed to 6-monthly feedback through a more formal rolling process evaluation.
The regular request for and response to feedback from the beginning resulted in innovations such as the formation of a WhatsApp group in which patient and public members could get to know each other, and changes to the meeting agenda (to allow more time for relationship building). It also led to the creation of a ‘feedback’ document, which made it clear how the guideline recommendations had changed because of patient and public member input. This feedback document supported patient and public members to feel encouraged and empowered, and to want to continue being involved and the share their vulnerability and stories that were often quite personal. This continuous improvement process has strengthened relationships and enhanced PPI processes and outputs as the guidelines programme has developed.
In ALEC’s COVID-19 living guidelines, the Consumer Panel met every 2 months. Directly after meetings, the guideline team sent panel members an anonymous survey with the following questions:
*What’s working well with the Consumer Panel?
*What needs improvement, or could be done differently?
*How could we improve the impact of patient and public member input to the COVID-19 guidelines?
*Is there anything else we should know?
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Case study: Formal process evaluation in a living guideline
LEAPP formal evaluation
In the LEAPP Pregnancy and postnatal care guidelines programme, the team is carrying out a mixed methods process evaluation to improve LEAPP processes and outputs as the guideline is developed. This process evaluation uses biannual activity audits and progress audits, online surveys of all LEAPP contributors (guideline staff, clinical panellists, and patient and public members), and interviews with purposively selected contributors. The survey for the Consumer Panel members explores:
*their satisfaction with the work of the LEAPP team
*their satisfaction with the level of PPI
*strengths in the processchallenges or opportunities for improvement
*what they have gained from their involvement and any disadvantages
*their perspectives on the impact that patient and public members are having on the LEAPP guideline.
The survey also evaluates the quality of PPI in the guideline development process using the 6-item Patient Engagement Evaluation Tool (PEET-6; Moore et al. 2022). After each round of evaluation, the findings are fed back to the LEAPP teams and panels to consider what is working well and what challenges need to be addressed. Providing these results as a series of repeated steps allows the LEAPP team to identify and address emerging issues and determine whether issues raised before are being effectively addressed, while the project is ongoing. |