PROMS-Initiative: Nominierung von Menschen mit MS
Als Mitglied der Multiple Sclerosis International Federation (MSIF) kann die Österreichische Multiple Sklerose Gesellschaft bis zu zwei MS-Betroffene mit guten schriftlichen Englischkenntnissen für eine Bewerbung im Rahmen der Initiative PROMS (Global Patient Reported Outcomes in MS) nominieren. Achtung: Anmeldeschluss 6. August 2020!
Patient-reported outcomes (PROs) measure a patient’s view of their own health, for instance through questionnaires.
PROs are used in MS research alongside clinical and biological data to show how a patient is experiencing their MS. Currently there are a number of well-designed PROs, but their use needs to be streamlined and optimized across countries and stakeholders to maximize their impact.
To address this, MSIF and the European Charcot Foundation are setting up the global Patient Reported Outcomes in MS (PROMS) initiative. This initiative aims to improve the quality of life of people affected by MS by maximizing the impact of PRO measures in MS research and clinical care.
It is essential that the voices of people affected by MS are embedded into each stage of the PROMS initiative. To enable this we are setting up an Engagement Co-ordination Team (ECT) within the PROMS initiative. The ECT will be composed of people affected by MS and experts in patient engagement from MS organisations and its role will be to design and implement the engagement of people affected by MS across the global project.
About the role
We are now recruiting passionate people who have MS, have a family member with MS, or care for someone with MS, to join the ECT. This is a unique opportunity for individuals to use their personal experiences of the condition to help shape the PROMS initiative. Individuals don’t have to be an active member of a panel, board, or committee to apply for this role. Specifically we are looking for:
- One person affected by MS to Co-chair the ECT
- Six people affected by MS to join as ECT lay members
Responsibilities of appointed individuals
- Representing the perspectives of people affected by MS
- Thinking broadly about MS and considering the questions and priorities that are most important to the diverse range of people affected by MS globally
- Participating in one in-person meeting each year (travel restrictions permitting), as well as monthly teleconferences
- Contributing to discussions on the engagement of people affected by MS across the PROMS initiative
Your opportunity to invite applicants
- Please read the attached role descriptions carefully to find out about the skills and qualities we are looking for in individuals who join the PROMS initiative
- You can then invite up to 2 people who are personally affected by MS and known to your organisation to apply to this/ these position(s). Individuals have the option to apply for the co-chair and/or lay member position(s) if they wish
- Please send the names and contact details of your invited applicants to Jenny Robertson, Public Involvement Manager at email@example.com
- Completed applications are to be sent to Jenny Robertson at firstname.lastname@example.org by 6th August 2020. Late applications will not be considered
- Applicants must have good written comprehension and be comfortable conversing in English
- This role is open to people who have been personally affected by MS, but we particularly welcome applications from those with a diagnosis of MS
- People who are employed by your organisation, a pharmaceutical company working on MS, or are current academic researchers in an MS-related field are not eligible to apply
- Nominated candidates must be prepared to travel internationally (travel restrictions permitting), and will be supported to organise this
- Expenses will be covered, and all meeting venues and accommodation will be fully accessible for people with disabilities
If you have any questions about the roles or the application process please contact Jenny Robertson at email@example.com.