Empowering patients through eHealth: a case report of a pan-European project

Abstract

BackgroundThis paper crystallises the experience developed by the pan-European PALANTE Consortium in dealing with the generation of relevant evidence from heterogeneous eHealth services for patient empowerment in nine European Regions. The European Commission (EC) recently funded a number of pan-European eHealth projects aimed at empowering European patients/citizens thus transforming the traditional patient/citizen role in the management of their health (e.g., PALANTE, SUSTAIN, CARRE, HeartCycle, Empower). However, the heterogeneity of the healthcare systems, of the implemented services and of the target patients, the use of ad-hoc definitions of the salient concepts and the development of small-size experiences have prevented the dissemination of “global” results and the development of cumulative knowledge. The main challenge has been the generation of large-scale evidence from heterogeneous small-size experiences.DiscussionThree lessons have been collectively learnt during the development of the PALANTE project, which involves 9 sites that have implemented different eHealth services for empowering different typologies of patients. These lessons have been refined progressively through project meetings, reviews with the EC Project Officer and Reviewers. The paper illustrates the ten steps followed to develop the three lessons.The first lesson learnt is about how EC-funded projects should develop cumulative knowledge by avoiding self-crafted measures of outcome and by adopting literature-grounded definitions and scales. The second lesson learnt is about how EC-funded projects should identify ambitious, cross-pilot policy and research questions that allow pooling of data from across heterogeneous experiences even if a multi-centre study design was not agreed before. The third lesson learnt is about how EC-funded projects should open their collections of data and make them freely-accessible to the scientific community shortly after the conclusion of the project in order to guarantee the replicability of results and conclusions.SummaryThe three lessons might provide original elements for fuelling the ongoing debate about the capability of the EC to develop evidence-based policies by pooling evidence from heterogeneous, local experiences.

Integrated Care Programs for People with Multimorbidity in European Countries: eHealth Adoption in Health Systems

“…A new organization of care seems needed for addressing appropriately the challenge of MM, which requires proactive integrated initiatives, especially for older people [12]. In this respect, eHealth solutions-i.e., the application of innovative Information and Communication Technologies (ICTs) in the healthcare sector [13]-have the potential to provide new tailored integrated care services to patients with MM, also supporting patient centeredness, self-management, and multidisciplinary care [14,15]. In fact, eHealth tools can offer to patients with MM relevant improvements for accessing personalized healthcare services and can enable new opportunities for treatment, rehabilitation, and maintaining healthy lifestyles and well-being [16].…”

“…Some evidences [4] in particular indicated that inclusion of eHealth tools in integrated approaches has the potential to increase safety and quality of care for patients, by providing continuity across health and social services. However, there are various potential barriers hampering the implementation of eHealth technologies targeting people with MM [36,40], such as lack of legislative regimes, lack of dedicated/adequate funding, limited privacy/ethics policies, and low adequate ICT infrastructures; also, cultural resistance to adopt technology both by patients and professionals [14], and lack of interoperability between eHealth applications [41] represent further barriers.…”

eHealth in integrated care programs for people with multimorbidity in Europe: Insights from the ICARE4EU project

“…Moreover, patients can overcome barriers for accessing healthcare services and also benefit from better monitoring and continuity of care, improved selfcare/management and independent living at home (especially for the older people). Yet various regulatory, technical and economic barriers exist that may limit the adoption of eHealth technologies [17,20,23], in addition to lacking/limited digital skills or cultural resistance of potential users, especially older patients [24,25].…”

The Limits of Empowerment: How to Reframe the Role of mHealth Tools in the Healthcare Ecosystem

“…However, in the UK, it significantly increased in popularity during the 1990s and early 2000s. It was (also) a reaction to the sustainability crisis faced by the NHS (Anderson and Gillam 2001;Lettieri et al 2015). This prompted the Government to pivot towards a new proactive paradigm of healthcare provision (Moerenhout et al 2018), focused on delivering 'P4' (personalised, preventative, predictive and participatory) medicine (van Roessel et al 2017).…”

“…There is, therefore, a need to start with understanding what empowerment actually means and build from there to a more complex critical analysis of the way in which it is operationalised in digital health strategy. This is difficult because the term itself is poorly defined (Lettieri et al 2015;Bravo et al 2015;Tengland 2007Tengland , 2008 and-despite the fact that the vociferous use of 'empowerment' by politicians, policymakers, clinicians, and technology providers may seem to indicate otherwise-it is used both loosely and inconsistently (Roberts 1999) by all these groups. A scoping review completed by Bravo et al (2015) found that even the most commonly used definition was still only used in 11% of the literature they reviewed.…”