Illness self-management support is key in cancer care, with timely provision of information and coping strategies being critical for the wellbeing of the person living with cancer. Telehealth is now a standard for providing remote support (Aapro et al. 2020).
Telehealth is well accepted by cancer patients and is effective in clinical outcomes (Afonso et al. 2022), and health service utilisation (Krzyzanowska et al. 2019). Oncology nurses are pivotal in this technology-mediated communication process, usefully supported CDSS, which assist triage and enable access to recommendations for symptom management (Klarenbeek et al. 2020).
However, evidence on supportive care pathways assisted by telehealth, emphasises the importance of continuous attention to cancer patients' needs (Leppla et al. 2020). Our research shows that current support relies heavily on in-person visits, causing patients to see their care as sporadic, leading to unmet needs (Ventura 2016). Therefore, models like the eHealth enhanced Chronic Care Model may transform outpatient oncology into continuous care with effective remote support integration (Gee et al. 2015).
Moreover, disease-centred perspectives limit the impact of telehealth-mediated healthcare (Triberti et al. 2019). PCC is vital to reduce the societal burden of long-term conditions (Britten et al. 2020). The European standard of patient involvement in healthcare (CEN/TC 450), establishing the minimum requirements for PCC (17398:2020), will prompt healthcare models towards person-centredness.
In PCC two experts meet in a symmetrical partnership: the expert in the illness experience and the expert in the medical knowledge (Ventura et al. 2022). Our research suggests that effective outpatient cancer care requires telehealth goals to acknowledge patients' as engaged actors in illness management (Ventura, Koinberg, Karlsson, et al. 2016). Accordingly, key objectives to promote remote person-centred support in outpatient cancer care, should enhance healthcare access and assist in evaluating concern severity (Ventura).
Illness management knowledge evolves constantly (Iglesias Urrutia et al. 2022), with growing insights in mediating person-centred care through telehealth (Ventura, Koinberg, Sawatzky, et al. 2016). Mediating a symmetrical partnership through technology is complex (Ventura, Brovall, and Smith 2022), with systems often relying on patient self-reports matched to CTCAE for communication and support (Girgis et al. 2018).
On the standardization of support interventions, our research on e-support systems based on PCC ethics highlighted the importance of attending to the concept of perceived support (Ventura, Koinberg, Karlsson, et al. 2016). The results require healthcare professionals to consider patients' life experiences and preconceptions when tailoring technology-mediated support to the perceived needs (Ventura, Koinberg, Sawatzky, et al. 2016), as oftentimes patients' perceived support diverges from caregivers’ perspectives on the provided support.
AI offers significant potential for personalized illness management, particularly in analysing extensive datasets beyond human capability (Chua et al. 2021). From a PCC perspective, utilizing AI responsibly and ethically, alongside proven scientific and clinical practices, can enrich patient narratives (Cederberg et al. 2022), fostering care partnerships based on mutual goals and decisions, ultimately enhancing patient wellbeing (Cederberg et al. 2022).
The Digital Person project aims to develop and validate a multidisciplinary AI-eCDSS for person-centred illness assessment and management in outpatient oncology, enhancing telehealth through predictive models that innovatively consider patient experiences and multidisciplinary management guidelines for symptom clusters. This effort from a solid interdisciplinary team, including patient partners, is likely to improve wellbeing and care efficiency.
The Digital Person main objective is to develop and validate a multidisciplinary AI-eCDSS for person-centred illness assessment and management in outpatient oncology care, as a means to improve satisfaction with telehealth.
To achieve it, the specific objectives are established as follows:
1. To develop an integrated framework for illness assessment and management for patients undergoing outpatient adjuvant cancer treatment;
2. To investigate the use of AI-based trustworthy software to 1) predict wellbeing of people undergoing adjuvant cancer treatment in outpatient oncology, towards personalised illness assessment; and 2) integrate the predictive model with multidisciplinary guidelines for illness assessment and management.
3. To investigate the implementation of AI-enhanced telehealth within a person-centred clinical workflow in outpatient cancer settings;
Societal and economic impact
Research shows that telehealth in cancer care enhances process outcomes and care experiences (Shaffer, 2023), with person-centred practices boosting both patient and staff outcomes (Rajamohan, 2019). The Project aims to enhance outpatient oncology telehealth satisfaction by integrating an AI-eCDSS for remote, person-centred illness assessment and management into OOS's daily clinical workflows.
The AI-eCDSS enables oncology nurses to identify and address illness experiences early, preventing adverse events, thus improving patient wellbeing, treatment adherence, emergency visit reduction, and healthcare access during cancer care.
Personalized illness management based on symptom cluster assessment fosters patient self-competence and literacy, promoting effective healthcare utilisation. Altogether, the Digital Person results have the potential to contribute to a better life for cancer patients and work satisfaction for nurses, while reducing healthcare services burden.
Scientific and technological impact
The Project's interdisciplinary nature will foster novel methodologies and best practices in healthcare, advancing knowledge in oncology nursing, symptom science, personalised health, technology-assisted person-centred care, and AI.
Through ESEnfC and supporting professional organizations, the Project aims to elevate oncology nursing in line with European standards, enhancing the specialization's identity and autonomy through programmatic education akin to existing MSc-level training.
Anchored in PCC ethics, the Project aims to enhance shared goal setting and decision-making, investigating PCC mediation through technology and its effects on outcomes for both patients and staff.
Integration of AI
Não aplicávelAapro, Matti, P Bossi, A Dasari, L Fallowfield, P Gascón, M Geller, K Jordan, J Kim, K Martin, and S Porzig. 2020. "Digital health for optimal supportive care in oncology: benefits, limits, and future perspectives." Supportive Care in Cancer 28 (10):4589-4612.
Afonso, Rosa Marina, Maria Miguel Barbosa, Constança Paúl, and Liliana Sousa. 2022. "Face-To-Face with the Pandemic: Experiences of Staff in Portuguese Residential Care Facilities." Journal of Gerontological Social Work 65 (7):782-794. doi: 10.1080/01634372.2022.2043505.
Britten, N, I Ekman, Ö Naldemirci, M Javinger, H Hedman, and A Wolf. 2020. Learning from the Gothenburg model of person centred health care, BMJ, 370, m2738.
Cederberg, Matilda, Andreas Fors, Lilas Ali, Anneli Goulding, and Åsa Mäkitalo. 2022. "The interactive work of narrative elicitation in person‐centred care: Analysis of phone conversations between health care professionals and patients with common mental disorders." Health Expectations 25 (3):971-983.
Chua, Isaac S, Michal Gaziel‐Yablowitz, Zfania T Korach, Kenneth L Kehl, Nathan A Levitan, Yull E Arriaga, Gretchen P Jackson, David W Bates, and Michael Hassett. 2021. "Artificial intelligence in oncology: Path to implementation." Cancer Medicine 10 (12):4138-4149.
Gee, Perry M, Deborah A Greenwood, Debora A Paterniti, Deborah Ward, and Lisa M Soederberg Miller. 2015. "The eHealth enhanced chronic care model: a theory derivation approach." Journal of medical Internet research 17 (4):e4067.
Girgis, Afaf, Ivana Durcinoska, Eng-Siew Koh, Weng Ng, Anthony Arnold, Geoff P Delaney, and PROMPT-Care Pathways Working Group. 2018. "Development of health pathways to standardize cancer care pathways informed by patient-reported outcomes and clinical practice guidelines." JCO Clinical Cancer Informatics 2:1-13.
Iglesias Urrutia, Cynthia P, Seda Erdem, Yvonne F Birks, Stephanie JC Taylor, Gerry Richardson, Peter Bower, Bernard van den Berg, and Andrea Manca. 2022. "People’s preferences for self‐management support." Health services research 57 (1):91-101.
Klarenbeek, Sosse E, Harm HA Weekenstroo, JP Michiel Sedelaar, Jurgen J Fütterer, Mathias Prokop, and Marcia Tummers. 2020. "The effect of higher level computerized clinical decision support systems on oncology care: a systematic review." Cancers 12 (4):1032.
Krzyzanowska, Monika K, Jim A Julian, Melanie Powis, Doris Howell, Craig C Earle, Katherine A Enright, Nicole Mittmann, Maureen E Trudeau, and Eva Grunfeld. 2019. "Ambulatory Toxicity Management (AToM) in patients receiving adjuvant or neo-adjuvant chemotherapy for early stage breast cancer-a pragmatic cluster randomized trial protocol." BMC cancer 19:1-10.
Leppla, Lynn, Juliane Mielke, Maria Kunze, Oliver Mauthner, Alexandra Teynor, Sabine Valenta, Jasper Vanhoof, Fabienne Dobbels, Lut Berben, and Robert Zeiser. 2020. "Clinicians and patients perspectives on follow-up care and eHealth support after allogeneic hematopoietic stem cell transplantation: a mixed-methods contextual analysis as part of the SMILe study." European Journal of Oncology Nursing 45:101723
Triberti, S., L. Savioni, V. Sebri, and G. Pravettoni. 2019. "eHealth for improving quality of life in breast cancer patients: A systematic review." Cancer Treat Rev 74:1-14. doi: 10.1016/j.ctrv.2019.01.003.
Ventura, F., M. Brovall, and F. Smith. 2022. "Beyond effectiveness evaluation: Contributing to the discussion on complexity of digital health interventions with examples from cancer care." Frontiers in Public Health 10:883315.
Ventura, Filipa. 2016. Person-centred e-support. Foundations for the development of nursing interventions in outpatient cancer care.
Ventura, Filipa, Ingalill Koinberg, Richard Sawatzky, Per Karlsson, and Joakim Öhlén. 2016. "Exploring the person-centeredness of an innovative e-supportive system aimed at person-centered care: prototype evaluation of the care expert." CIN: Computers, Informatics, Nursing 34 (5):231-239.
02/06/2025
31/05/2028
O Cuidado Centrado na Pessoa: dos modelos conceituais à implementação
Care Systems, Organization, Models, and Technology