A TOOLKIT FOR CO-CREATION: HOW TO PARTNER WITH PATIENTS AND PATIENT ADVOCACY GROUPS IN DIGITAL OBSERVATIONAL STUDIES

Co-creating digital apps for observational studies with patients and patient advocacy groups (PAGs) ensures that the apps are tailored to meet the needs of study participants, increasing the likelihood that they are useful in helping to manage their conditions.

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Since 2016, Vitaccess has developed a number of bespoke “bring your own device” iOS and Android mobile apps to evaluate the impact of conditions (including Charcot-Marie-Tooth disease, and melanoma) in the real-world.

In line with published recommendations, creation of the apps has always been informed by early input from potential participants and PAGs, including face-to-face interactive onboarding workshops with PAG representatives and patients from target countries. Such early feedback provides important insights into the tailoring of the apps, including:

  • the components of burden of disease that need to be included;

  • the relevance of different patient-reported outcome (PRO) instruments and acceptable frequency of their administration;

  • the potential usefulness of importing patient generated health data (PGHD) into the app;

  • the study logo;

  • the recruitment plan;

  • the communication methods.

 
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To improve the value of the apps to participants and promote ongoing engagement, feedback from users is also sought as the studies progress. Feedback of this type is collected through a variety of interactive means (e.g., online polls, focus groups) which aim to record patient preference and patient satisfaction from using the app. Digital technology is also harnessed for large scale feedback from study participants to adapt PRO instruments (e.g., PRO-CTCAE). Ongoing feedback is useful to understand how participants are interacting with the apps, any challenges they might be facing when using them, and any additional features they might find useful in helping manage their conditions.

For more information about our extensive experience of creating digital apps for patients, please contact us at digital@vitaccess.com.