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Call to Action

Patients in the digital world: the EPIS Call to Action

The EPIS Community is calling on multiple stakeholders to take action to ensure patients have a voice in digital development and access to digital solutions that can improve their lives.

About the Call to Action

Summary of the Call to Action

Technology developers

Establish a dialogue with patient communities, to understand their biggest unmet needs and how technologies could be used to address these needs.

Involve patients from the start and throughout the development process, where patients are the end-user or beneficiary. Involve other end users, like healthcare professionals, if they are also going to use or recommend the digital health solution to patients.

Ensure that issues with accessibility or understanding are considered early in digital health solution development.

Healthcare professionals

Be curious about the potential of digital health solutions to help meet patients’ needs and open to using technologies that have been shown to help improve patients’ health.

Engage with other stakeholders during development of digital health solutions, so clinical aspects are considered during the development process.

Embrace the use of electronic health records (EHR) in daily practice and push to break down organizational and technical barriers to the optimal implementation of EHR in health services across Europe.

Pharmaceutical companies

Explore ways digital health solutions can be deployed to better capture the patient experience of a medicine and the burden of living with a given condition.

Involve patients in the end-to-end development of digital health solutions.

Continue to connect the dots between the data that companies collect from various sources, generating insights that can help identify innovative solutions to patient problems.

Policy makers

Support the uptake of digital health solutions that have been shown to have the greatest impact on patients’ lives and wellbeing.

Reconsider policies relating to medical device assessment and recommendation, to decrease the time it takes for digital health solutions to come to market, so that when they do, they are current and relevant.

Change the way that healthcare is financed in order to, for example, stimulate the more widespread use of EHR.

Address patients’ concerns about data-sharing without making it too difficult for patients to share their data.

Patient advocates

Join forces with other interested patient advocates to develop common solutions to shared problems associated with the use of digital health solutions.

Increase knowledge of digitalization in healthcare to effectively contribute to digital health solution development.

Seek out opportunities to engage with all stakeholders in the digital ecosystem, so that they better understand the patient perspective and will be more likely to engage early and systematically with patients in the development of digital health solutions.

The consensus on the concrete actions identified in the Call to Action was reached during the 2019 Summit. The EPIS community first discussed and voted on which technologies have the most benefits and the most concerns for the patient community. The technology voted to have the most benefits but also the most challenges was the Electronic Health Records. For the full results of the voting please see the graphs below.

What is the most beneficial technology?

Electronic health records

Key Option Votes %

What is the technology with the most concerns?

Electronic health records

Key Option Votes %

The community then identified the most important questions that need to be asked about the challenge of securing a stronger voice for patients in digital health solution development. The top three were as follows:

  • How do we involve all patients?

  • What do we need to do to ensure that patients become the most important voice in the decision-making process regarding digital health solutions and data privacy?

  • How do we create a robust governance framework that includes the participation of different types of patients in the development of technologies so that tools created are fit for purpose?

Finally, the EPIS community voted on the key actions that can be taken to ensure a strong patient voice in the development of digital health solutions. The most popular key action was to build a governance framework for involvement of patients. For full results of the voting, please see the graph below.

Key actions that can be taken to ensure a strong patient voice in the development of digital health solutions

Build a governance framework for involvement of patients

Key Option Votes %

EPIS 2019 at a glance

  • >400 Patient advocates
  • 18 European hubs
  • 2 way connectivity and live-streaming
  • Presentation, panel discussion, break-outs and live-voting

EPIS community in action

ASENDHI
@hidrosadenitis

#EPIS2019 The Spanish Hub at #EPIS2019 elect electronic health records as most beneficial technology #pacientes #hidrosadenitis #hidradenitis

Neurological Alliance of Ireland
@naiireland

Great insight into benefits and drawbacks associated with digital health today at #EPIS2019

AVEC
@AVEC_fr

#EPIS2019 - debating advantages in and concerns about electronic health records EHR.

Global Heart Hub
@GlobalHeartHub

Feedback from the Belgian Hub at #EPIS2019 Electronic health records coming out as no.1 most beneficial technology. #digitalhealth