People diagnosed with cancer are increasingly receiving treatment at outpatient settings. While spending more time in a familiar environment and being able to continue their daily life activities, they have to more actively engage in behaviours of adjusting to cancer and manage symptoms and treatment side effects.

With the overall aim of exploring complementary supportive resources for the person receiving outpatient oncological care, with special focus on the role of information and communication technologies (ICT), the planned research studies follow the Medical Research Council (MRC) framework for complex interventions in health and the principles of user-centred design for the development and implementation of digital solutions. The working plan contemplates 7 individual studies situated in the development, piloting, evaluation and implementation phases of the MRC framework to answer the overall research question:
● How should a person-centred supportive digital solution be developed and evaluated in order to assist the provision of support tailored to the unique needs and preferences of the person throughout the oncological care continuum?

The specific objectives for the research project are:
1. To acquire an in-depth understanding of the outpatient cancer care context where the intervention will unfold particularly concerning the provision of support, information and communication;
2. To understand the efforts undertaken by the person receiving oncological treatment to satisfy their supportive needs and their preferences concerning supportive digital solutions designed specifically to satisfy their informational and communication needs throughout the oncological care process;
3. To contextually and culturally adapt a person-centred health communication application in light of the state of the art of digital technology aimed at assisting the provision of support, i.e. person-centred e-support system, throughout the oncological care process;
4. To assess the usability of the Aptus with a) patients undergoing outpatient oncological treatment and b) healthcare team;
5. To assess the feasibility of the Aptus at the outpatient oncological care unit;
6. To evaluate the effectiveness and cost-consequences of the Aptus;
7. Implementation & Dissemination

The planned work is underpinned in the knowledge base developed during the research program conducted towards the degree of doctor of philosophy in health care sciences at the Gothenburg University, wherein a prototype for support of women receiving chemotherapy for breast cancer was developed and preliminary tested for usability. The current work-plan seeks to translate the knowledge and evidence gathered in the Swedish context to the Portuguese clinical practice.
The work-plan includes qualitative and quantitative research designs to answer both the exploratory and explanatory inquiry specific for each stage of intervention research.
The accomplishment of the specific objectives will result in a person-centred e-support system that complement the provision of support to the person undergoing oncological treatment in outpatient cancer care. Similar resources have shown evidence in other countries of improving patient-relevant outcomes and diminishing admission to hospital due to side effects or cancer treatment complications. The successful completion of the project will lead to an effective complementary communication and supportive resource that will be implementation-ready in the daily practice of outpatient cancer care.

Gothenburg Center for Person-centred Care (GPCC)

Center for Health Evaluation & Outcome Sciences, Vancouver, Canada

Regional Cancer Center West, Gothenburg, Sweden

Department of Science and Engineering, FCTUC, Coimbra

Liga Portuguesa Contra o Cancro

Serviços Partilhados do Ministério da Saúde: Telemedicina da Região Centro

Greenhalgh, T., Wherton, J., Papoutsi, C., Lynch, J., Hughes, G., Hinder, S., ... & Shaw, S. (2018). Analysing the role of complexity in explaining the fortunes of technology programmes: empirical application of the
NASSS framework. BMC medicine, 16(1), 66.

Richards, D. A., & Rahm Hallberg, I. (2015). Complex interventions in health: an overview of methods .
Abingdon, Oxon: Routledge.

Wolpin, S., & Stewart, M. (2011). A deliberate and rigorous approach to development of patient-centered
technologies. Seminars in Oncology Nursing, 27 (3), 183-191. doi:10.1016/j.soncn.2011.04.003

Expected results

In light of the preliminary results in the Swedish context, the person-centred e-support system is expected to contribute to the enhancement of the role of the person in the cancer care continuum on one hand and to
work satisfaction of the healthcare team on the other hand. The person is expected to experience a) lower
levels of distress related to illness and treatment events, b) person-centred support, and c) self-reinforcement.
These outcomes are expected to mediate an increased wellbeing.
The implementation of the person-centred e-support system is expected to impact the care delivery model
towards the enhancement of its person-centredness by specifically contributing to a) a more symmetrical
partnership in care, b) patient involvement in the care continuum, and c) improved communication processes.

Indirectly, the translation of the system into practice is expected to contribute to the enhancement of care
accessibility, cost-effectiveness delivery of care and healthcare integration between primary and secondary
levels of care settings.