Funded by the LBG Austria and in collaboration with the LBG OIS during 2021 we will work on a project to involve and engage cancer patients in the development of Patient-reported Outcome research guidelines
Background – the role of the patient in PRO research:
With the shift towards a patient-centred medicine over the last two decades, the subjective patient perspective has become a valuable source of information for understanding disease and treatment toxicities/ consequences. This is also reflected in the way medical treatments are evaluated. The assessment of patient-reported outcomes (PROs), reflecting the subjective patients’ perspective on the benefits and harms of medical treatments or interventions, have become crucial endpoints in research. However, patients are hardly included as decision makers in the methodological study set up. This is true also for the decision on which PROs are assessed in a study and how they are used.
What the PROguide project aims to accomplish:
In our project, we will make a selection of the most important guideline documents on the development and use of PROs in oncology accessible to patients in Austria in order to discuss their content and to amend them with issues relevant to patients. This will be done in structured meetings with cancer patients and survivors, which will include an educational part on PRO research, the presentation of the selected guidelines, their discussion and adaptations. In addition, suggestions for future guideline development will be collected. We specifically are also looking for patients/survivors who would be willing to present the project at conferences and meetings and to engage in patient activities in the context of PRO research in Austria on a more long-term basis.
The jointly developed material will be communicated to the scientific community to further strengthen patient-centeredness of PRO research. In addition, we will draft a white paper on patient involvement in PRO research reflecting the views of cancer patients, cancer survivors and PRO researchers in collaboration with all these stakeholders.