PATIO - PAtient Involvement in Oncology
Ludwig Boltzmann Institut Applied Diagnostics
Personalized medicine and the involvement of patients in decision-making processes in the medical and healthcare system is one of the top issues of recent years and of high current and future social relevance. Ways and methods for improved patient-doctor communication have received attention both in science and in practice. Currently, veritable initiatives where physicians, researchers, and patients meet on eye-level, remain rare. PATIO is a particularly cooperative project that combines scientific findings from medicine, linguistics and natural sciences with the practical know-how of prostate cancer (PCa) affected persons as social actors in Austria.
In a previous pilot phase of PATIO, the established Austrian PCa patient support group "Selbsthilfe Prostatakrebs" was won as a partner. The organization's co-founder and chairman has since helped shape the project as a member of the core team. He was instrumental in recruiting ten co-researchers, including nine patients and one relative who accompanied her husband on their shared way/path with PCa. Two "roundtables" as a co-creation format were held with seven of them in June and September 2020. A concept for a (digital) prototype will emerge from the current funding period that addresses the perspective of those affected. This will allow the project team to continue the shared mission based on the trust and mutual understanding previously built between researchers and co-researchers. Next, a trialogue will be initiated as a basis for translating findings into new research questions and potential practice changes for the benefit of patients. A co-creation workshop will be structured according to the focus topics of the five core team members: Patient Empowerment, User-Centered Functionality, Language, Best Engagement Practices, and Strategy/Sustainability. Experts with practical experience ranging from the starting point of "diagnosis" (e.g., urology, nuclear medicine) to everyday support (e.g., occupational therapy, psychology) will actively participate. The expected outcome is the implementation of an advanced version of the participation tool, which will have common benefits for both stakeholders and actors from society, medicine and humanities. This will be disseminated in the respective networks using a communication strategy developed together with the co-researchers, as well as publicized.
By applying Open Innovation in Science approaches along the entire research process and project implementation, the main goal of PATIO is to involve and collaborate with people directly and indirectly affected by PCa. This collaboration directly addresses SDGs 3, 10, 16 and 17. By learning from the lived experiences of those affected as well as experts in the field, the project can help improve the quality of life (QoL) of those both directly (patients) and indirectly (family, friends) affected in the future (SDGs 4, 10). To enable the best individual QoL for PCa patients, a holistic view of the patient's situation is required. Together with empowered patients, it will be possible to create a people-centered ecosystem in the healthcare system. PATIO aims to be a best-practice example by combining the first-hand expertise of PCa patients and accompanying persons with the knowledge from multidisciplinary sciences and the practical experience of health professionals.
Methods for Patient and Public Involvement and Engagement (PPIE) essentially have to be adopted to the unique issue and the community. PPIE also requires the transdisciplinary teams to stay open for upcoming needs and ideas along the process. Here, PATIO pioneers PPIE within the Austrian cancer research landscape. An engagement tool co-developed within the project will provide a novel and innovative infrastructure to knowledge sharing within the triangle patients, health care experts, researchers. The ultimate goal is to support patients along their way with PCa and beyond therapy.
For sustainable maintenance and to assure replication of the practice, PATIO makes use of Open Science practices and detailed documentation of the entire research process in an Open Innovation in Science framework. Outputs are shared and disseminated under a common licence and published also on the project’s website. The formation of partnerships with various stakeholders and actor groups brings the potential to introduce the SDGs also to other institutions. While PATIO is currently implemented on a local level in Austria, there is a strong potential for upscaling the practice beyond a single country, since health related matters and in particular PCa affects humans worldwide.
PATIO website: https://www.applied-diagnostics.at/patio/ Social media Facebook: https://www.facebook.com/patio.projekt/ Instagram: https://www.instagram.com/projekt.patio/ YouTube: https://youtube.com/playlist?list=PLnaenaGQ5nF9dwXSUbQm6FKyvx7mdoamd
With the emergence of SARS-CoV2 and the imposed restrictions, social interactions have changed. The community addressed in PATIO is one of the most vulnerable in any societal health crisis, as we are now experiencing under COVID-19. As a result, many affected men and their caregivers will have to redesign their daily lives, especially after therapy is completed. The whole society is extremely challenged, but the changes can also be a great opportunity. We are experiencing a momentum in which we can develop new methods and ways of patient-doctor communication, as well as Patient and Public Involvement and Engagement (PPIE) strategies. PPIE approaches have immense potential to foster collaboration between medical, scientific and societal stakeholders.
SDGS & Targets
Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all
Build resilient infrastructure, promote inclusive and sustainable industrialization and foster innovation
Promote peaceful and inclusive societies for sustainable development, provide access to justice for all and build effective, accountable and inclusive institutions at all levels
Deliverables & Timeline
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PATIO consists of members from academia and a patient representative of Self-Help PCa Austria. Nine patients and a relative contribute to the extended team with knowledge and lived experience. PATIO is focussing on the benefits for patients and their wishes in the development process, here also health economic experts will be involved. The final product will support patients and relatives in their daily life with PCa, and close gaps in current research agendas.