All projects and groups we support
The OIS Center funds and supports initiatives to involve citizens, patients, and other stakeholders as active participants in research at different stages of the research process, aiming at embedding public involvement activities in the Austrian research landscape.
Our funding schemes are accompanied by embedded facilitation and support services, including personal consultation, training opportunities and peer networks.
Research benefits in terms of increased quality and impact on society by addressing citizens’ and stakeholders’ needs and embracing their knowledge from personal experience or practice. Our selection panels and boards follow the same principles and are therefore external and independent bodies including relevant stakeholders outside academia.
„The Future We Want!“
3 key projects of the „The Future We Want!“ OIS Lab
Technological advances are transforming everyday life, giving rise to new opportunities that will benefit society and give science a chance to explore exciting frontiers. The LBG OIS Center and the LIT Open Innovation Center of the Johannes Kepler University Linz (JKU) want to collectively tap into the potential. Open innovation in science will give research a chance to focus on society’s needs around the discourse on technological future trends.
Under the motto „The Future We Want!“, the Lab has invited JKU scientists to submit projects at the crossroads of people and technology; projects that generate social benefits, are transdisciplinary and interdisciplinary in nature, and actively involve members of the public to be part of the research process.
Action for Sustainable Future Hub
6 key projects of the ASFHub
We live in times of multiple crises: economic crisis, ecological crisis, biodiversity crisis and crisis of distribution. To address these crises, innovative and creative ideas are needed. The LBG OIS Center and the University of Applied Arts Vienna have therefore established the „Action for Sustainable Future (ASF) hub“. The ASF hub supports 6 projects working at the interface of art, science and society to address sustainable development in the sense of the UN Agenda 2030, by developing concrete solutions with high societal relevance in order to advance the sustainable transformation of society. All projects are participatory and largely initiated by civil society actors.
Principle Aims of the ASF hub
Fostering societal awareness for sustainable development
Enabling possibilities for action through the participation of civil society representatives within projects
Supporting inter- and transdisciplinary collaborations between civil society, science and arts
Developing impact criteria for participatory scientific and artistic research
Increasing democracy by offering possibilities for participation while considering diversity within society
Patient and Public Involvement and Engagement (PPIE) 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Projects funded by the OIS Research Enrichment Fund
Open research behind closed doors: Assessing the impact of Covid-19 measures on persons deprived of liberty with psychosocial and intellectual disabilities
The Coronavirus pandemic has an immense impact on the lives of millions of individuals; equally and especially on persons in detention facilities. Persons deprived of liberty with psychosocial and intellectual disabilities are in a particularly vulnerable situation since they are overrepresented in prisons and ‘disproportionately impacted due to attitudinal, environmental and institutional barriers that are reproduced in the Covid-19 response’ as the Office of the High Commissioner for Human Rights acknowledged.
With this project, the Ludwig Boltzmann Institute of Human Rights (BIM) in cooperation with partners from Austria, Italy and Germany aims to assess the challenges faced during the Covid-19 pandemic by persons with psychosocial and intellectual disabilities, who are detained as a result of their criminal behaviour and/or as a result of exemption of criminal responsibility due to their disability. More specifically, the project will identify paths for future research on the challenges of pandemics in closed institutions, develop recommendations on how the situation of persons deprived of liberty with psychosocial and intellectual disabilities in times of a pandemic can be improved, while simultaneously raising awareness on the topic.
To achieve these goals, the project will apply open innovation in science methods. This will enable an early and structured involvement of persons deprived of liberty with psychosocial disabilities, their relatives and experts closely working with them (e. g. lawyers, representatives of extramural care facilities and so on), who will be actively participating in the conceptualisation of the project, the identification of challenges as well as of pathways for future research at various stages of the project. Moreover, the project is carried out by organisations with longstanding, some representing the interests of persons who are deprived of their liberty and of their relatives. With their active involvement through co-developing and co-designing the project the effective engagement and empowerment of persons with lived experience will be strengthened.
Selbst- und Interessenvertretung zum Maßnahmenvollzug (Austria), Fachhochschule Dortmund (Germany), Antigone (Italy)
PATIO – Empowering a Vulnerable Societal Group During the Corona Crisis
SARS-CoV-2 affects society as a whole – people with prostate cancer (PCa), however, find themselves in a particularly challenging situation: the continuous exchange with caregivers and other people experiencing similar conditions is severely limited. Despite the fact that this is crucial for re-gaining and maintaining one’s well-being.
The project „PATient Involvement in Oncology“ (PATIO) was originally initiated within the “Lab for Open Innovation in Science” (LOIS II) program. Supported by the LBG OIS Center, the project team collaborates closely with the support group for prostate cancer affected people in Austria (Selbsthilfe Prostatakrebs). Together, the team established a dialog with those affected and started to make their voices heard in research, especially during the Covid-19 pandemic. Currently, (prostate) cancer patients were found to be severely affected by the novel disease. It was observed that especially older cancer patients and patients with a cancer history have an additional risk for a poorer outcome of the infection.
More than ever, we are concerned with the following questions: What is currently most challenging for patients and their caregivers? What solutions did they come up with that have a positive impact on their quality of life? Together with and for people belonging to the frequently mentioned „vulnerable group“, the project contributed to create a tool for bundling their needs and lived experience. During social isolation, it is even more important to empower these persons affected by PCa in two ways: valuing their expertise and supporting the exchange of experiences. For this purpose, a (technical) communication solution is co-developed together with ten patients and caregivers who assume their roles as co-researchers.
PATIO aims to create an information and support platform and simultaneously a unique direct link to dedicated research – a medium adding to personalized medicine 2.0. Gathered challenges, needs and individual solutions of those affected are made accessible to the general public and to the research community in order to rapidly close research gaps.
Project team: Together with linguist and (digital) humanities expert Amelie Dorn, Markus Mitterhauser, Sanja Moldovan and Marie Niederleithinger as well as Ekkehard Büchler, patient advocate and according to his own statement, „bedrock of the prostate cancer community in Austria and Europe“, form the PATIO core team.
Institute: The research focus of the Ludwig Boltzmann Institute Applied Diagnostics is to develop minimally invasive, personalised diagnostic methods for prostate and colon cancer. Consortium partners of the Institute are the Medical University of Vienna, the University of Vienna, IASON GmbH, Molecular Diagnostics Group, Charles River, and ORANO SA.
Co-production of home-based digital support for cardiac patients to continue with rehabilitation during Covid-19 social isolation restrictions
The corona crisis has led to severe disruption of outpatient cardiac rehabilitation services. Patients with cardiovascular disease have been forced to rely largely on self-directed rehabilitation exercise training in their daily lives – a daily life of unprecedented self-isolation.
In this project, we sought to alleviate this exceptional situation by providing digital resources, thereby supporting patients in continuing the cardiac rehabilitation they have started at home. Using Open Innovation in Science methods (co-production, co-design, and community building), we tested, adapted, and evaluated digital resources together with patients, experts, and scientists from the University Institute for Sports Medicine in Salzburg.
Through this project, we were able to develop support for patients during this difficult time, using digital technologies for the rehabilitation of cardiovascular disease. Moreover, we were able to draw important learning and knowledge gains from this project, which will directly benefit the LBG Digital Health and Prevention Institute’s overall research programme going forward.
Team: Stefan Tino Kulnik, Josef Niebauer, Andreas Egger, Rada Hussein, Bernhard Reich, Mahdi Sareban, Andreas Stainer-Hochgatterer, Thomas Stütz.
CONNECT is a collaborative project between the Ludwig Boltzmann Institute for Lung Vascular Research, the Medical University of Graz and the Copenhagen Business School. The project aims to enable different users of medical research results to participate in the development of new research projects in an innovative and open manner. The process was started with a co-creation workshop in November 2019 where various user groups such as patients, relatives, therapists and nurses contributed with their experimental knowledge to the research expertise of molecular biologists and clinical scientists. Different prototypes were created together that will serve as templates to “translate” current research literature regarding fibrosis research. Parallel to prototype design, a crowdsourcing platform is implemented on which the „translated“ research literature can be accessed by anyone interested. The transfer of knowledge is characterized by transparency and the use of a simplified language, and thus allows the participation of different user groups in research. The crowdsourcing process is expected to identify persons who are interested to contribute their experiential knowledge in new research projects.
Grazyna Kwapiszewska, Ludwig Boltzmann Institute for Lung Vascular Research
Sarah Bundschuh, Ludwig Boltzmann Institute for Lung Vascular Research
Cooperation partners: Selma Mautner, Medical University of Graz
Please visit this Website [de] for more information.
The Political Economy and Ethics of Rare Diseases Research in Austria and Beyond
The question of how genomic information should be communicated to patients has been a hotly debated topic for a number of years. Our participatory project explores the experiences and views of rare disease patients and their families in connection (a) with how genetic and genomic information has been, and should be, communicated and (b) with the current pandemic situation. Our participatory approach includes rare disease patients right from the beginning as active participants of the research team: Thus, the research design will be co-created in collaboration with patients and patient organisations. The research team (i.e. the LBI-RUD project team + participating patients and family members) will meet for a series of workshops to develop a research design to explore the two topics. This means that participants will decide together on research questions, methods, tools for analysis as well as dissemination of findings. After the collaborative research design development, the research itself will be also carried out jointly. Depending on the outcome of the co-creation process, the research design could include interviews, focus groups, and surveys. Every member of the research team can be part of every step in the research process, e.g. conduct interviews or write about findings, but doesn’t have to be involved, depending on capacities and preferences.
Prof. Dr. Christiane Druml, Prof. Dr. Barbara Prainsack, Antonia Modelhart