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

BACKGROUND: This 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. DISCUSSION: Three 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. SUMMARY: The 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.

Proposal for a European Public Health Research Infrastructure for Sharing of health and Medical administrative data (PHRIMA).

In Europe, health and medical administrative data is increasingly accumulating on a national level. Looking further than re-use of this data on a national level, sharing health and medical administrative data would enable large-scale analyses and European-level public health projects. There is currently no research infrastructure for this type of sharing. The PHRIMA consortium proposes to realise the Public Health Research Infrastructure for Sharing of health and Medical Administrative data (PHRIMA) which will enable and facilitate the efficient and secure sharing of healthcare data.

Patient Empowerment and its neighbours: clarifying the boundaries and their mutual relationships.

Patients are increasingly encouraged to become active players in self-care and shared decision-making. Such attention has led to an explosion of terms - empowerment, engagement, enablement, participation, involvement, activation - each having multiple and overlapping meanings. The resulting ambiguity inhibits an effective use of existing evidence. This study addresses this problem by delivering an evidence-based concept mapping of these terms that delineates their boundaries and mutual relationships. We implemented a literature review of contributions associated to patient empowerment, activation, engagement, enablement, involvement, and participation. We implemented a keyword-based strategy collecting contributions published in PubMed database in the 1990-2013 timespan. A total of 286 articles were selected. The results identified three distinct interpretation of patient empowerment, either conceived as a process, an emergent state or as a participative behaviour. Most definitions recognize empowerment as the combination of ability, motivation and power opportunities. A concept mapping for patient empowerment, activation, enablement, engagement, involvement, and participation was then delineated. The concept map consists of two dimensions (nature and focus of concept) and marks distinctions and relationships between the concepts. The resulting concept map paves the way for a number of future research directions that can help improve our understanding of the antecedents and consequences of patient empowerment policies.