List of Recommendations

Recruitment

Propose and explain the study to a potential candidate regardless of socioeconomic status, gender or age.
Take the time to give participants explanations about: study design, expected benetis and risks related to the study, what is expected from the participant including periodicity of PROs, reasons to stay enrolle and the possibility to leave at any time, expected time to access the first study results.
Use different methods to deliver information about the research planned: direct contact with physician, multidisicplinary team, patient community & associations, paper and virtual flyers, social media, e-mail).

Consider providing study information material, ePROs, focus groups and key informative interviews in different languages. This allows the inclusion of foreigners or refugees that don’t speak the official country language.
Study materials should be adapted to the participants literacy and should be easy to read and understand. A key strategy for promoting participant comprehension is the use of plain language.

Collecting a minimum set of sociodemographic data in your study can give you a better understanding of the representation and diversity of your participants.
Depending on your research objectives it can also give you insights of social determinants of health and how social disparities impact oncology outcomes.
Choose the number and the extension of the questionnaires adequately: a study with a high number or extensive questionnaires could reduce the patient's interest to participate and consequently reduce retention over time. Questionnaires should be adapted to patient literacy.
Whenever possible, opt for a validated questionnaires. Questionnaires ideally should be validated in the scope of your research, the language, and the population to be evaluated.
WeShare proposes a library of validated ePROs, tested by the WeShare user committee.
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Consider providing study information material, ePROs, focus groups and key informative interviews in different languages. This allows the inclusion of foreigners or refugees that don't speak the official country language.
Study materials should be adapted to the participants literacy and should be easy to read and understand. A key strategy for promoting participant comprehension is the use of plain language.

Offer a flexible schedule and adequate time to research participation, including questionnaire answering, key informative interviews, and focus groups. Providing a flexible schedule on different days makes participation possible for participants with different availabilities.
If focus groups or key informative interviews are performed online, a digital navigator may be offered for patients with reduced technology access or not comfortable with the use of technology devices. Computers may be available in the research center for patients without internet access at home.
A digital navigator may be offered for patients with reduced technology access or not comfortable with the use of technology devices. In-person support with tablets or computers in the research centers may ease the process. A phone call support can also help patients navigate in the ePRO system. You may also have additional paper questionnaires in the research center or to be posted by mail.

Consider providing study information material, ePROs, focus groups and key informative interviews in different languages. This allows the inclusion of foreigners or refugees that don't speak the official country language.
Study materials should be adapted to the participants literacy and should be easy to read and understand. A key strategy for promoting participant comprehension is the use of plain language.

Don’t forget to share the results of your study with the participants! You may prepare a specific informative material for study participants and deliver it through different communication channels. It is an opportunity to thank the participant and show how its participation accelerated research in the area studied.
Acknowledge the participant’s effort. Thank-you messages or thank-you gifts can be a form of valuing participation and may also improve study retention.

Consider providing study information material, ePROs, focus groups and key informative interviews in different languages. This allows the inclusion of foreigners or refugees that don't speak the official country idiom.
Study materials should be adapted to the participants literacy and should be easy to read and understand. A key strategy for promoting participant comprehension is the use of plain language