Funded projects – PPIE call

Projects of the Patient & Public Involvement and Engagement call

Projects

  • Co-creating Lina Support & Evaluation Materials

    Supportive peer relationships and an inclusive classroom climate in the middle school transition positively affect pupils’ wellbeing. The D.O.T. research team develops, with stakeholder involvement, the first digital intervention game for classrooms (LINA) that aims to foster these relevant aspects. The PPIE project aims to take stakeholder involvement one step further, to co-create the basis for the practical application and the evaluation of LINA. We plan three co-development workshops, using a variety of methods (e.g. brainstorming, discussions) to involve stakeholders in different research processes. In collaboration, researchers and stakeholders will co-create (1) evaluation tools, (2) teacher materials, and (3) co-conduct a LINA evaluation study. We expect that this close collaboration will directly affect the quality and acceptability of our research outcomes and increase trust in research. We aim to publish our first-hand experiences, using PPIE principles and methods.

    Contact
  • Patient involvement in oncology – PATIO

    Every year, around 5000 men in Austria are diagnosed with prostate cancer (PCa). Each of us sooner or later will know an affected person, or be affected himself. Empowering patients in treatment decisions to achieve the individually best quality of life (QoL) after the diagnosis is therefore a topic we urgently need to act on across disciplines and actor groups. The cases where medical experts, researchers, doctors, and patients meet entirely at eye level are to date very rare. Actively encouraging patients to participate in developing solutions to their complex challenges, which concern society as a whole, is of great relevance. Our cooperative research project PATIO „Patient Involvement in Oncology” aims to be a game-changer by combining first-hand know-how from patients and caregivers with knowledge from multidisciplinary sciences and practical experience of healthcare professionals. Enabled by this triad and essentially together with representatives of those affected in society, a sustainable involvement tool will be implemented, serving as a portal for making their voice heard.

    Contact
  • Participatory research with vulnerable population groups on their experiences and needs during a pandemic

    The year 2020 has shown that social inequality can foster the development of a pandemic and at the same time make inequality visible and even greater. People in precarious living and working conditions are exposed to a higher risk of infection and are also more affected by the consequences of measures taken against the pandemic. Therefore, this project will examine the experiences and needs of selected population groups during the time of a pandemic. Method: Representatives of these population groups should be involved as co-researchers from early on. In total, seven research workshops for research planning, data collection, interpretation, and dissemination will take place. The professional researchers from GÖG will provide the necessary framework and support. Impact and Outcome: Ultimately, needs and experiences are to be identified and overarching recommendations that provide orientation for future measures are to be derived by those affected themselves.

    Contact
  • Student health advisory board at Carinthia University of Applied Sciences – SHAB@CUAS

    Universities are an important setting for creating health-promoting living environments. However, they have mostly focused on establishing a workplace health promotion for employees, while students represent a neglected target group. Nevertheless, evidence shows various threats to students’ health, and a large number of students are affected. Students represent the majority at the university. A Student Health Advisory Board (SHAB) is a suitable measure to empower their decision-making and self-organization in the field of health. Therefore, the team wants to initiate a SHAB at Carinthia University of Applied Sciences (CUAS) to advance and realize health-promoting measures among the university and to initiate and support self-determined actions among students for their health. SHAB members will co-design within all project steps, implement project steps, and make project decisions. Through this project, students’ participation will be increased, enabling the highest possible level of involvement, also with the aim to become a model of good practice for other universities.

    Contact
  • Accessible user interfaces for people with cognitive disabilities

    Equal access to information in the digital age is very important for everybody, including people with disabilities. Webpages are often not accessible for people with cognitive disabilities, as the content is often difficult to understand. Therefore this project is developing a software tool that helps people with cognitive disabilities to better understand web content. The tool provides different means to simplify web content. Some of these simplifications are very simple, like layout simplifications for better readability, others are very complex, such as automated translation of text in easy-to-read language, or symbol annotation using artificial intelligence. The projects aim to design a prototype of an innovative user interface with these functionalities and evaluate it with a large-scale involvement of users with cognitive disabilities as co-researchers, to better understand and define how to present, interact and operate such a tool for better understanding and usability. This cooperation will then lead to new insights on the requirements of people with cognitive disabilities, and a co-designed interface concept.

    Contact
  • Computer-based clustering of chronic fatigue syndrome patients for faster diagnosis and definition of suitable treatment options – from CFS patients for CFS patients (CCCFS)

    Chronic Fatigue Syndrome (CFS) is a multi-systemic disease with yet unknown cause. Patients suffer from long lasting-extensive exhaustion, neurological and cognitive disorders as well as an altered immune response. Due to similarities of symptoms with other diseases (e.g. depressive disorders) and a lack of awareness, up to 90% of patients are estimated to be incorrectly diagnosed and treated. Although viral infections with e.g. Epstein-Barr-Virus or autoimmunity are speculated to represent disease-initiating events, mechanisms of disease progression remain largely unknown. In this patients’ centered project, useful diagnostic steps and potential treatment options will be identified. Together with medical specialists, involved CFS patients will drive the development of a questionnaire allowing a computer-based data analysis. Constant reports on social media and a podcast series will raise public awareness. Based on identified symptom-treatment-clusters, the search for reliable disease biomarkers and treatment will be facilitated in future scientific projects.

    Contact
  • Involving young people with type 1 diabetes in research and the development of health care activities – YOUNGSTARS1

    Type 1 diabetes (T1D) is a complicated condition that requires constant monitoring and making many decisions. Living with T1D means checking blood sugar levels, injecting insulin, and being careful with what to eat. In the life of a young adult, several things are going on and youngsters do not want to control themselves all the time. They want to be rebels and feel free. Teenagers living with T1D face great challenges and are usually not asked to make suggestions on how to improve their situation.

    In this project, teenagers living with T1D become active partners in the research process, from data collection to data interpretation. They are enabled to tell their story by visualizing their everyday life through photographs and recordings, by discussing their needs and resources in groups, and by structuring and interpreting data to formulate and illustrate an action plan. Finally, young adults living with T1D should feel empowered to communicate their needs to decision-makers. Being involved could help young adults to shape the diabetes care services that really support them.

    Contact
  • Science4all

    The project aims to co-create and implement a training program for patients/citizens to enable them to become co-researchers, and to identify together the best possible way to co-perform molecular fibrosis research. The training program will cover a typical molecular research project in pulmonary fibrosis and will be tested and co-evaluated with co-researchers. The team expects to have a training booklet and a dictionary at the end of the project. Co-researchers will benefit from hands-on experience so that they can actively contribute to future projects, train other patients/citizens and disseminate to advocacy/self-help groups. Researchers will gain experience on how to communicate on eye level with co-researchers, how to co-create their molecular research projects and how to involve co-researchers at different stages. The team also anticipates input regarding new research questions and research methods during the project. All knowledge gained will be shared with the public to enable better involvement of patients/citizens in molecular research.

    Contact
  • ACTpatient – Austrian Clinical Trials with patients

    Clinical trials form the scientific basis for the development of new therapies and for the improvement of existing ones leading to medical advances that society in general relies on. So far, patient participation in the organization and conduction of clinical trials is highly uncommon in Austria, yet especially clinical research can pose a burden to participants that is hard to estimate for researchers. The project aims to increase patient involvement in clinical stroke research. This is achieved through the following steps: 1. Set up of a patient board as consulting body for the clinical trial platform of VASCage. 2. Design of a questionnaire on unmet patient needs in the acute, subacute, and chronic phases of stroke patients, with the option to become involved in the patient investigator group for interested patients; The questionnaire will be provided in easy-to-read German. 3. Set up and training of the patient investigator group. 4. Patient board and patient investigator group design and conduct interviews with stroke patients. 5. Analysis and interpretation of results, definition of crucial unmet needs. 6. Discussion of unmet needs with relevant stakeholders in Tyrol. In addition, the results and approaches to address the identified unmet patient needs will be disseminated to the public and stroke patients.

    Contact
  • Nothing about us without us! PPI paediatric oncology? That’s how it works!

    Having cancer as a child or adolescent is a life-changer for the young patients, as well as their families. Luckily, up to 80% of childhood cancer patients survive – with the price of moderate to severe late-effects in 70 – 90%. Tailoring research to patients’ and survivors’ needs to improve quality of life (QOL) would be of great importance for this growing group of patients whose QOL depends on innovations in treatment and care. Unfortunately, PPIE has not yet fully entered paediatric oncological research. This project aims at finding out prevailing knowledge and opinions towards PPIE, from both patients and health care professionals. In close cooperation with patient advocates (CCI Europe), an explorational workshop and an online survey with children, adolescents, and health care professionals will be conducted. Based on the results a PPIE training tool and a position paper for HCPs, patient organizations, and other external stakeholders will be developed and implemented.

    Contact
  • A project to integrate cancer patients in the development of patient-reported outcome research guidelines – proguide

    With the shift toward a patient-centered medicine over the last two decades, the subjective patient perspective has become a valuable source of information for understanding the toxicities/ consequences of diseases and treatments. This is also reflected in the way medical treatments are evaluated. 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 setup. This is true also for the decision on which PROs are assessed in a study and how they are used.
    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. The project PROguide will specifically also involve patients/survivors who would be willing to present the project at conferences and meetings and 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 the patient-centeredness of PRO research. In addition, the team 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.

    Contact