What matters to patients? A mixed method study of the importance and consideration of oncology patient demands.

BACKGROUND: A patient-centred approach is increasingly the mandate for healthcare delivery, especially with the growing emergence of chronic conditions. A relevant but often overlooked obstacle to delivering person-centred care is the identification and consideration of all demands based on individual experience, not only disease-based requirements. Mindful of this approach, there is a need to explore how patient demands are expressed and considered in healthcare delivery systems. This study aims to: (i) understand how different types of demands expressed by patients are taken into account in the current delivery systems operated by Health Care Organisations (HCOs); (ii) explore the often overlooked content of specific non-clinical demands (i.e. demands related to interactions between disease treatments and everyday life). METHOD: We adopted a mixed method in two cancer centres, representing exemplary cases of organisational transformation: (i) circulation of a questionnaire to assess the importance that breast cancer patients attach to every clinical (C) and non-clinical (NC) demand identified in an exploratory inquiry, and the extent to which each demand has been taken into account based on individual experiences; (ii) a qualitative analysis based on semi-structured interviews exploring the content of specific NC demands. RESULTS: Further to the way in which the questionnaires were answered (573 answers/680 questionnaires printed) and the semi-structured interviews (36) with cancer patients, results show that NC demands are deemed by patients to be almost as important as C demands (C = 6.53/7 VS. NC = 6.13), but are perceived to be considered to a lesser extent in terms of pathway management (NC = 4.02 VS C = 5.65), with a significant variation depending on the type of non-clinical demands expressed. Five types of NC demands can be identified: demands relating to daily life, alternative medicine, structure of the treatment pathway, administrative and logistic assistance and demands relating to new technologies. CONCLUSIONS: This study shows that HCOs should be able to consider non-clinical demands in addition to those referring to clinical needs. These demands require revision of the healthcare professionals' mandate and transition from a supply-orientated system towards a demand-driven approach throughout the care pathway. Other sectors have developed hospitality management, mass customisation and personalisation to scale up approaches that could serve as inspiring examples.

How to Design a Remote Patient Monitoring System? A French Case Study.

BACKGROUND: Remote Patient Monitoring Systems (RPMS) based on e-health, Nurse Navigators (NNs) and patient engagement can improve patient follow-up and have a positive impact on quality of care (by limiting adverse events) and costs (by reducing readmissions). However, the extent of this impact depends on effective implementation which is often restricted. This is partly due to the lack of attention paid to the RPMS design phase prior to implementation. The content of the RPMS can be carefully designed at this stage and various obstacles anticipated. Our aim was to report on an RPMS design case to provide insights into the methodology required in order to manage this phase. METHODS: This study was carried out at Gustave Roussy, a comprehensive cancer centre, in France. A multidisciplinary team coordinated the CAPRI RPMS design process (2013-2015) that later produced positive outcomes. Data were collected during eight studies conducted according to the Medical Research Council (MRC) framework. This project was approved by the French National Data Protection Authorities. RESULTS: Based on the study results, the multidisciplinary team defined strategies for resolving obstacles prior to the implementation of CAPRI. Consequently, the final CAPRI design includes a web app with two interfaces (patient and health care professionals) and two NNs. The NNs provide regular follow-up via telephone or email to manage patients' symptoms and toxicity, treatment compliance and care packages. Patients contact the NNs via a secure messaging system. Eighty clinical decision support tools enable NNs to prioritise and decide on the course of action to be taken. CONCLUSION: In our experience, the RPMS design process and, more generally, that of any complex intervention programme, is an important phase that requires a sound methodological basis. This study is also consistent with the notion that an RPMS is more than a technological innovation. This is indeed an organizational innovation, and principles identified during the design phase can help in the effective use of a RPMS (e.g. locating NNs if possible within the care organization; recruiting NNs with clinical and managerial skills; defining algorithms for clinical decision support tools for assessment, but also for patient decision and orientation).

Internet-based technologies to improve cancer care coordination: current use and attitudes among cancer patients.

BACKGROUND: The uses of internet-based technologies (e.g. patient portals, websites and applications) by cancer patients could be strong drive for change in cancer care coordination practices. The goal of this study was to assess the current utilisation of internet-based technologies (IBT) among cancer patients, and their willingness to use them for their health, as well as analyse the influence of socio-demographics on both aspects. METHODS: A questionnaire-based survey was conducted in June 2013, over seven non-consecutive days within seven outpatient departments of Gustave Roussy, a comprehensive cancer centre (≈160,000 consultations yearly), located just outside Paris. We computed descriptive statistics and performed correlation analysis to investigate patients' usage and attitudes in correspondence with age, gender, socioeconomic status, social isolation, and place of living. We then conducted multinomial logistic regressions using R. RESULTS: The participation level was 85% (n=1371). The median age was 53.4. 71% used a mobile phone everyday and 93% had access to Internet from home. Age and socioeconomic status were negatively associated with the use of IBT (p<0.001). Regarding patients' expected benefits, a wide majority valued its use in health care, and especially, the possibility to enhance communication with providers. 84% of patients reported feeling comfortable with the use of such technologies but age and socioeconomic status had a significant influence. CONCLUSION: Most patients used IBTs every day. Overall, patients advocated for an extended use of IBT in oncology. Differences in perceived ease of use corresponding to age and socioeconomic status have to be addressed.