Chain of Trust

The European Patients’ Forum (EPF) has implemented, together with six other partners (EFN, PGEU, CPME, TIF, NST, & SUSTENTO), an EU project co-financed by the EU Public Health Programme called “Chain of Trust” (CoT).

Started in January 2011, this two-year EU project aims to assess the perspectives of the main end users of tele-health services, i.e. patients, doctors, nurses and pharmacists across the EU, to see whether and how views have evolved since the initial deployment of tele-health, and what barriers there still are to building confidence in and acceptance of this innovative type of services in order to orient political recommendations at EU level.

As a key partner in this project, the EFN participated in several meetings in 2011, such as the European Patient Forum (EPF) e-health project – Chain of Trust – Kick off Meeting and the EU Project Chain of Trust Steering Committee meetings, which were used to discuss the key elements of the project and to get project partners’ feedback on their experience of working in the CoT consortium, as well as the progress made in the work packages and future milestones. In addition to this, the EFN met with the consortium in May during the Chain of Trust EU project – WP4 Meeting in order to discuss and agree on the questionnaire for an online survey to be hosted on a website and designed by the EPF. The survey questions were catered to users and non-users of tele-health services in order to gather their views on issues such as education, confidentiality, liability, security, and accessibility.

The EFN members were asked to disseminate the survey to their members (individual nurses) and encourage them to respond to the online survey with the aim of getting substantive and relevant quantitative and qualitative data on tele-health from a user’s perspective. As a follow-up to this, several National Workshops took place in 6 European countries (Norway, Latvia, Netherlands, Poland, Portugal, and Greece) with the ultimate goal of validating the information collected through the online survey and to discuss the barriers for taking up e-Health.

Next to the National Workshops, a set of EU focus groups and National Roundtables are foreseen with the objective of raising awareness of national stakeholders on the project outcomes and promote the integration of users’ perspective in national eHealth agendas and plans. The EFN also continuously updated the consortium on the perspective of the nurses during teleconferences that were held throughout the year in order to share developments made in the individual work packages.

Ultimately the project will aim at strengthening significantly the levels of awareness and trust for all key stakeholders. The findings and the recommendations will constitute a unique tool to inform policies and decision-making at various levels.

The Chain of Trust project is financed by the EU Public Health Programme and will last 24 months until December 2012. The project consortium comprises the following partners:

  • European Patients’ Forum (EPF, project leader)
  • Standing Committee of European Doctors (CPME)
  • Pharmaceutical Group of the European Union (PGEU)
  • European Federation of Nurses Associations (EFN)
  • Thalassaemia International Federation (TIF)
  • Norwegian Centre for Telemedicine and Telecare (NST)
  • Latvian Umbrella Body for Disability Organisations (SUSTENTO)

During the first quarter of 2011 the Chain of Trust consortium conducted a literature review with the objective of understanding patients’ and health professionals’ views, needs and barriers regarding telehealth as expressed in the literature and gathering information as to communication approaches and tools used to raise awareness of telehealth and communicate it to the end users. The analysis of the literature sources investigated (total 168) provided an overview of the state of the art knowledge on user perspectives on telehealth and highlighted a number of under-researched areas and knowledge gaps requiring further investigation.

The literature review of the project was completed in late April and its results set the ground for the design and implementation of an online survey targeting the four user groups identified for this project (patients, doctors, nurses and pharmacists). The purpose of the online survey was to collect additional information on patients’ and health professionals’ perceptions and experience of telehealth in order to validate and complement the findings of the literature review. The online survey was made up of two questionnaires, one for patients and one for health professionals, both users and non-users of telehealth services. It had been running from early June to late July 2011 and was available in 13 languages – English, French, German, Polish, Norwegian, Latvian, Greek, Portuguese, Dutch, Spanish, Italian, Romanian, and Lithuanian. We received a total number of 6704 responses (1646 from patients and 5058 from the three healthcare professional groups) – which is well above the 4000 responses target we had set at the beginning – from across 30 European countries. The data is currently being analysed and the results will be merged with the findings of the literature review into an intermediate deliverable which will be made public in October 2011.

The consortium is now working towards the third core project activity, i.e. the national workshops. These national workshops will be carried out between late September and mid-November 2011 in six European countries, namely Greece, Latvia, the Netherlands, Norway, Poland and Portugal. Their ultimate objective is to assess through a qualitative approach the views, needs, benefits and barriers related to telehealth from the perspective of the four telehealth user groups in six European countries in order to enable the Chain of Trust consortium to validate and further complement the findings of the literature review and the online survey. The national workshops will be organised and delivered with the fundamental support of local members of the partners of the Chain of Trust consortium.