Table 1 Contributions of the Patient Panel to different workstreams
Date | Activity |
|---|---|
May 2018 | Patient portal feedback and development The group reviewed the content included on the platform and shared their feedback with the audit team to allow them to make the content and navigation more patient friendly. They also suggested functionality that would be useful for patients |
April 2019 | BSR Annual Conference The Patient Panel chair presented about the importance of including the Patient Reported Outcomes (PRO) in the audit |
October 2019 | Writing the first annual patient and public report The group co-produced the report with the Project Manager identifying content relevant to patients and ensuring that the information was presented in a format suitable for patients and members of the public |
October 2019 | Training for participation in BSR initiated rheumatology service review Group members involved in the Quality Review Scheme received training on how to effectively review rheumatology services. They were given opportunities to feedback on the process |
April 2020 | BSR Annual Conference The Patient Panel Chair presented findings from the first annual report focusing specifically on the PRO to the rheumatology multi-disciplinary team |
June 2020 | Disease activity score functionality on the webtool The group reviewed the new functionality added to the NEIAA patient portal allowing patients to examine and report on swollen and tender joints and provided feedback to the NEIAA team that led to necessary changes to be made |
August 2020 | NEIAA supplementary report webinar speaker [31] The Patient Panel Chair presented findings from the supplementary report to the rheumatology multi-disciplinary team |
October 2020 | Quality improvement plan The group reviewed the QI plan ensuring that the content was focused on improvement objectives that would ultimately improve the quality of care provided to patients in England and Wales, e..g. preparing and sharing resources with the MDT |
November 2020 | HQIP Annual General Meeting presentation The Patient Panel Chair presented the involvement of the Patient Panel in the audit |
January 2021 | Writing the second annual patient and public report The group co-produced the report with the Project Manager identifying content relevant to patients and ensuring that the information was presented in a format suitable for patients and members of the public |
February 2021 | NEIAA second annual report webinar The Patient Panel Chair presented findings relating to patients from the second annual report to the rheumatology multi-disciplinary team |
April 2021 | Podcast discussing journal paper [32] In the recording Dr Marwan Bukhari talks to Paul Amlani-Hatcher (NEIAA Patient Panel Chair) and Dr James Galloway (King’s College, London) about findings from the NEIAA. After introducing the audit, Dr Galloway discusses predictors of disease activity, while Paul Amlani-Hatcher explains how the data may help to inform and empower people with inflammatory arthritis |
April 2021 | BSR annual conference The Patient Panel Chair presented findings from the second annual report focusing specifically on the patient reported outcomes to the rheumatology multi-disciplinary team The presentation was entitled “Clinician and pro data collection—why is this important” and was part of a wider session on NEIAA. The presentation was drafted by the Patient Panel Chair with input from the other panel members and other speakers in the session. The overriding message was to present the patient focus on what was important in the findings with a focus on mental health and employment impacts. There were several follow up questions from the audience seeking further clarity on the points made—the Patient Panel Chair responded to these questions “live” in the session |
June 2021 | Clinic visit framework The group led on the production of the framework described in detail in this paper, based on their lived experiences attending a range of different outpatient clinics with positive and negative aspects |
January 2022 | Reviewing and providing feedback for the short report on ethnicity Several Patient Panel members reviewed the content of the report and provided feedback on the data presentation and information included in the document. Also, one of the Patient Panel Members described his personal experience about his care at a rheumatology outpatient clinic when he was diagnosed with RA and its impact on his life living with a long-term condition |