Our work

Patient Engagement in Digital Health and Data

Towards better patients centred digital health outcomes
and impact through the involvement of patients.

Is digital health overlooking patient participation?

The increasing use of new Information and Communication Technologies (ICTs – often called “Digital”) have created new opportunities for the entire health ecosystem. Alongside this, the COVID pandemic has accelerated the speed of adoption of new innovations within the realms of healthcare from digitalization of clinical trials to telehealth. However, amidst this acceleration of innovations certain concerns have been raised:

  • What is the role of the patient community in the digitalization of healthcare and life sciences processes?
  • How can Patient Engagement (PE) good practices be implemented on a large scale and systematically?
  • How are patients’ rights defined and protected in this “new era”?

This project focuses on bringing the relevant stakeholders together to map, understand, define and align on patient engagement best practices across drugs, devices and digital, when applicable, while also raising awareness and building the community of early adopters of patient engagement standards for digital health and data.

The co-creation process roadmap:

Review learnings from PE in drug and medical device development

Validation of findings and co-creation of PE standards in digital

Call to action for implementation of systematic PE in digital health

Dissemination of PE best practices and support for implementation

Ongoing communication to increase awareness, build momentum and community of champions

How will we achieve the shared goals?

Step 1

Engage with a larger group of stakeholders that include tech companies, app developers and others that might not have been the relevant stakeholders in patient engagement in the drug development continuum, but still have a relevant connection with human-centred design, UX (user experience) or equivalent practices developed in the tech industry. Together we will:

  • Review and take stock of learnings from the evolution of patient engagement in the drug development area to identify the useful patient engagement practices that might be applicable for the digital era.
  • Address specific questions linked to data and design.
Step 2

Call to action those relevant stakeholders in the digital era to align on the patient engagement best practices to ensure that the patient voice is systematically included in all aspects of the healthcare continuum.

Step 3

Disseminate the co-created patient engagement best practices far and wide and support their implementation.
Alongside all these steps, we will raise awareness of the need for patient engagement standards in the midst of the rapid digital innovation of health and ensure that early adopters in digital health are also supported.