A new patient community led report ‘The European Patient Innovation Summit (EPIS) Position Paper on Digital Health from a Patient Perspective’, has been published to help patients, healthcare professionals, technology developers, policy makers and payers to better understand gaps and inconsistencies in digital health solutions that could directly benefit patients in Europe. The EPIS position paper also makes a series of recommendations to transform the development and uptake of digital health technologies with the goal of benefitting patient wellbeing.
The EPIS position paper was co-created by 10 Steering Committee members from seven different European countries, including eight patient organization representatives. The uniquely patient-centric resource captures the perspectives of over 270 patient advocates from 13 European countries (Austria, Bulgaria, Czech Republic & Slovakia, France, Germany, Hungary, Ireland, Italy, Portugal, Slovenia, Spain, Switzerland, Central European Cluster Hub in Serbia).
The position paper was developed following EPIS 2018, held in November 2018. It aimed to address the factors that have prevented patients from benefitting from digital health solutions and make recommendations to ensure that future digital health solutions will be more relevant and patient-friendly than those in use today; be more rapidly adopted; and help empower patients to take control of their lives and improve their overall well-being.
EPIS is a unique opportunity for patients to discuss the latest technology innovations that could improve their lives.
The recommendations are:
- Patients should be involved in all stages of the development of digital technology
- There is a need to build an evidence base to demonstrate the impact of new technologies on patients’ health and well-being
- Patients’ concerns about digital technologies (e.g. security and data protection) need to be addressed so that they will be more likely to use impactful technologies
- All patients with chronic conditions, regardless of their digital literacy, economic level, education or disabilities, should have access to technologies
- Healthcare professionals need to be aware of digital technologies and see their value as tools to empower patients and be encouraged to use them as part of their daily practice
- Multi-stakeholder and industry alliances should be established to avoid duplication of effort and ensure that patient-relevant digital technologies are developed in the most efficient and effective way possible
Dr. Stanimir Hasardzhiev, the National Patients` Organization, Bulgaria, and member of the EPIS Steering Committee comments: "The EPIS position paper is important because it is a collective, united guideline written by patients themselves, teaching the healthcare world how patients should be treated and regarded. It has great potential to become the ultimate tool setting a standard amongst stakeholders on how modern healthcare developments should be made."
"The challenge lies in ensuring current and new technologies are valuable for patients as well as healthcare professionals and can be used quickly and easily. We hope the recommendations set out in the EPIS position paper will drive positive change in the development and adoption of new, impactful digital health solutions", said Giuseppe de Carlo, European Federation of Allergy and Airways Diseases Patients' Associations (EFA) and member of the EPIS Steering Committee.
The European Patient Innovation Summit (EPIS) was established in 2016 as a platform for patient advocates from across Europe to discuss all aspects of digital health and to achieve consensus on the patients’ position on different issues relating to the digital world. EPIS includes an annual event organized and funded by Novartis. The content of EPIS is developed together with a Steering Committee that represents the patient community. It uses an innovative multi-site and multi-lingual format to enable patient advocates to learn more about developments in digital health and discuss how to embed a stronger patient voice within the digital health ecosystem.
Recommendations from the EPIS2018 Position Paper include the need to build an evidence base to demonstrate the impact of new technologies on patients’ health and wellbeing, and to involve patients in all stages of the development of digital technology aimed at empowering them.