We have worked closely with ROS UK – the only UK-wide charity dedicated to improving the care of people with osteoporosis and the NotROS Patient Support Group. NotROS has 250 members in Nottingham, is actively involved in fund-raising events, holds local awareness campaigns and educational update meetings and is closely aligned to ROS. Supporting research is featured highly within the NotROS group, and a number of patients are currently involved as research lay members.
Following the commissioned call, we undertook two focus groups, one with the ROS (n = 3) and one with NotROS (n = 7), who influenced the design of this application, choice of study outcomes and agreed to be involved throughout the study. In particular, the NotROS group was keen that we include the views of patients offered a range of treatments, who have received treatments both in the hospital and the community and the views of older as well as younger patients. ROS felt it would be important to include the views of commissioners since often their views were in conflict with those of the patients due to competing healthcare priorities and cost-efficiency savings. In terms of dissemination, ROS were keen we include webinars, which they have found to be effective and wide-reaching and happy to support stakeholder and dissemination events given their established networks. Two members of NotROS agreed to be co-applicants, both with previous research experience, and ROS agreed to be a co-investigator to support the delivery on the study.
In addition, both of our co-applicants from NotROS have had a range of alternative BP treatments over the last 10 years, from daily ALN, weekly ALN and monthly IBN to more recently IV ZOL (both as a day case attendee in hospital and community IV ZOL service at home). Thus, they were able to present their own experiences as well as those of service users.
Our PPI groups were closely involved in the further management of the research, supporting the regulatory approvals, developing participant information resources, contributing to the reporting of the research and dissemination of research findings. More specifically, ROS UK took a leading role in convening and ensuring a nationally representative sample of multidisciplinary stakeholders at the stakeholder/consensus events (Stage 2) and will support a wider national dissemination programme. The proposed dissemination programme will include outputs to policy-makers, commissioners, operational managers and change agents, health professionals, patients and the public. ROS have a successful record of organising and delivering both national and regional multistakeholder events, and costs have been included for the stakeholder events (three bespoke regional dissemination meetings and three dissemination webinars).
AB and MH are named co-applicants for the NotROS group and worked with the Study Management Group throughout the project. Their experiences as patients suffering with osteoporosis and access to services (as described above) were found to be invaluable in better understanding the patient journey. AB and MH were also able to draw on the wider views of the NotROS 250 patient membership support group at regular intervals throughout the study. Our PPI members from the NotROS group were further supported by the hospital PPI team.