Patient voice must be stronger in digital health, says advocacy group


An advocacy group has issued a “call to action” to make sure patients are closely consulted in the development of digital health technologies.

The steering committee of the European Patient Innovation Summit (EPIS) – a Novartis-backed group set up in 2016 as a platform for patient advocates to discuss digital health – says the call aims to overcome the factors that have prevented patients in Europe from truly benefitting from digital health.

EPIS says the uptake of digital solutions is slow and varies greatly across different European countries, so patients are still not benefitting from digital health products that could empower them to take control of their lives and improve their overall wellbeing.

The new document covers all the organisations involved in the digital health sector – technology developers, pharma companies, healthcare professionals, policymakers and patient groups themselves – making recommendations “to ensure the patient voice is incorporated into the development of digital health solutions.”

Ultimately, the goal is to improve the health and wellbeing of the millions of people living with a chronic condition in Europe today, according to the EPIS.

Technology developers and pharma companies should set up a dialogue with patient communities early in the development process, and involve them throughout, says EPIS.

“Patients have not been involved enough to date,” according to Cécile Ollivier, chief operating officer of Aparito, a French company which specialises in wearable tech and mobile apps for patient monitoring.

“User experience and design should be intuitive, and technology should be designed to gather data that matters most to patients,” she said.

Healthcare professionals should be “curious and open to the potential of digital health solutions for their patients, embracing their use in daily practice.”

They should also be consulted for their expertise to ensure clinical questions are addressed during development, says the report.

When it comes to policymakers, the key recommendation is to support the uptake of digital health tech whilst at the same time addressing issues related to data-sharing – in particular making it easier for patients to share the information, says EPIS.

Patient advocacy groups meanwhile should draw on each other’s experiences and expertise with the use of digital health to assist the development process, and spread the word about digitalisation of healthcare amongst their members.

“Bringing together all of the stakeholders involved in digital health solution development may be challenging,” commented Birgit Bauer of the European Multiple Sclerosis Platform (EMSP).

“We need a guiding governance framework, that sets out clear roles and responsibilities, defines concrete ways that the patient should be involved in the end-to-end development of digital solutions, and ensures dialogue between interested parties remains open to finding solutions to implementation barriers, like financial resources,” she added.