Table 7.

Main socio-demographic and data-type specific factors that affect willingness to share.

Data type	Socio-demographic factors	Data-type specific factors
Person-generated health data	Intention to share for primary use depends on the following variables: Lower intention Older age (older than 55 years) (AORs 0.37–0.42, p < 0.01) (Bauer et al., 2017) Older age (older than 50), lower education degree (those having less than a bachelor's degree), lower income (Serrano et al., 2016); Older age (M = 3.84, SD = 0.12; F (2,107) = 7.439, p < 0.001) (Vervier et al., 2019). Intention to share for secondary use depends on the following variables: Higher intention Younger age (up to 34 years), (Pilgrim & Bohnet-Joschko, 2022); Male gender, and younger age (Cloos & Mohr, 2022).	Intention to share for primary use depends on the following variables: Higher intention Smartphone ownership and mobile health use (AORs 1.77–3.04, p < 0.01) (Bauer et al., 2017); Trust in information from their health professionals (Serrano et al., 2016); Higher health self-efficacy, higher level of trust in providers as a source of health information, higher level of physical activity, those with a higher frequency of wearable use, and who reported use of smartphones or tablets to help communicate with providers had greater odds of willingness to share data with providers (Rising et al., 2021).
Personal health data and information	Intention to share for primary use depends on the following variables: Higher intention Higher education level (β 5.0.18, p < 0.01) (Esmaeilzadeh, 2020b); Higher education (OR 2.17, 95% CI: 1.08–4.37) (Holderried et al., 2023); Age–with 1 year of increase in age, the log-odds of providing consent increases by 0.054 units (OR = 1.055; p < 0.0001), Female gender—for female patients, the odd of providing consent is 46% more than their male counterparts (OR = 1.460; p = 0.0003) (Yaraghi et al., 2015); Male respondents were more willing to share HD (OR = 2.2; 95% CI: 1.1–4.6) (Dhopeshwarkar et al., 2012); HC occupation (Itzhaki et al., 2023). Intention to share for secondary use depends on the following variables: Higher intention Younger age, female gender, HC occupation and region of residence (Europe and Middle East were more willing than North Americans and Asians) (Helou et al., 2021); Younger patients (≤49 years) were more uncomfortable than older patients (50 + years) with sharing data even within their own hospital (13% vs 2%, p < 0.05) (Tosoni et al., 2021); Younger age, higher education level (Karampela et al., 2019); Younger age - age group comparisons showed significant differences between the 75 and over age group and those in the 35–44 (χ2 (2) = 12.86, p = 0.002), 45–54 (χ2 (2) = 10.81, p = 0.004), 55–64 (χ2 (2) = 16.09, p < 0.001) and 65–74 (χ2 (2) = 19.75, p < 0.001) categories (Mursaleen et al., 2017); Increasing age, being retired and primary level of education were significantly associated with higher willingness to share: OR 1.39 (95% CI: 1.18–1.63), 2.00 (95% CI: 1.22–3.29) and 3.91 (95% CI: 1.95–7.85), respectively (Buckley et al., 2011); HC provider status–mothers with one HC provider (aOR 1.61, 95% CI: 0.95–2.73) increased their likelihood of willingness to share their EMR data with researchers by 2.7 times (Bouras et al., 2020); Higher education, White race (Kim et al., 2017).	Intention to share for primary use depends on the following variables: Lower intention Experiences of discrimination in the HC (OR 3.7; 95% CI: 2.6–5.2, p < 0.001), low trust in providers using health information responsibly (OR 2.3 95% CI: 1.4–3.6, p = 0.001) (Nong et al., 2022) Negative perceptions about the impact of EHRs (Kim et al., 2015) Higher intention Satisfaction with HC (OR 0.6 95% CI: 0.4–0.8, p = 0.001) (Nong et al., 2022); Trust in provider confidentiality (Iott et al., 2019); Patient–physician relationship and patient involvement (Abdelhamid et al., 2017); Trust in providers (Teixeira et al., 2011); Imposing safeguards to protect against unauthorized viewing, being able to see who has viewed their information, to stop electronic storage of their data, to stop all viewing, and to select which parts of their health information are shared (Dhopeshwarkar et al., 2012). Intention to share for secondary use depends on the following variables: Anonymity preferences (32.9% preferred anonymity, 28.2% of participants preferred pseudonymization) (Muller et al., 2022); Preferences for study-specific consent due to ethical concerns about potential research uses, and so they indicated a preference to be informed, educated, and given a choice (Tosoni et al., 2022); Perception about usefulness for public health research, data not being sensitive, and trust that their identity will remain anonymous after sharing it (Helou et al., 2021); Users, uses, data sensitivity, consent; government agencies and public institutions were the most trusted users of data (Lysaght et al., 2021); Respect of privacy, choices and needs for information regarding the use of participants' data (Courbier et al., 2019); Level of digitalization in their country (Karampela et al., 2019); Level of identification of data (Jung et al., 2020); Preference about being asked for permission health information use for any purpose other than medical treatment, and knowledge about data user (King et al., 2012); Being informed about their data being shared (Johansson et al., 2021); Being informed about who was using their data for what purposes, as well as about outcomes of the research (Kim et al., 2017); Type of use and obtaining consent (Grande et al., 2014); Data use, data user and data sensitivity (Grande et al., 2013); Sensitivity of information (Grande et al., 2015); Anonymity, research use, engagement with a trusted intermediary, transparency around PCHR access and use, and payment (Weitzman et al., 2010); Comfort level in sharing electronic health record data for personalized HC was highly correlated with sharing social media data (r = 0.78, p < 0.01) and sharing GPS location and text message data (r = 0.90, p < 0.01) (Garett & Young, 2022).
Biobank data	Intention to share for secondary use depends on the following variables: Lower intention Lower educational attainment—high school vs PhD, MD or similar (48%, OR 0.34, 95% CI: 0.20–0.53), religiosity (very religious vs not at all) (OR 0.77, 95% CI: 0.48–0.88) (Antommaria et al., 2018); Higher intention Younger people were more willing to share (Mezinska et al., 2020). Higher educational attainment (those with high school expressed lower intention to share vs those with PhD OR 0.47, 95% CI: 0.33–0.67, lower religiosity (“Very religious” participants were less willing to participate (63%) than “not at all religious” participants (OR 0.68, 95% CI: 0.54–0.85) (Sanderson et al., 2017). Self-identified white race (Black or African American participants expressed lower intention to share OR 0.59, 95% CI: 0.47–0.76) (Sanderson et al., 2017); Willingness to participate was higher in younger (18–24: aRP = 1.29, 95% CI: 1.12–1.49; 25–34: aRP = 1.16, 95% CI: 1.03–1.31) compared to older age groups (55–64; 65–74; 75–79), higher educated (those with compulsory education or less were less willing (aRP = 0.66, 95% CI: 0.55–0.80) whereas people with tertiary education were more willing (aRP = 1.24, 95% CI: 1.16–1.33) to participate), non-religious respondents (aRP = 1.17 95% CI: 1.04, 1.30) compared with very religious, and those with a background in the health sector (those who do not work aRP = 0.86, 95% CI: 0.80, 0.93 compared with those that work) (Brall et al., 2021).	Intention to share for secondary use depends on the following variables: No previous involvement in research and positive attitudes toward biobanks (Ahram et al., 2022); perceiving more research benefits, fewer concerns, and fewer information needs (Sanderson et al., 2017).
Genomic data	Intention to share for secondary use depends on the following variables: Lower intention Older age was significantly associated with a decreased willingness to share research data with non-profit organizations and any researcher who requests the information (OR = 0.96; 95% CI = 0.94, 0.99 and OR = 0.98; 95% CI = 0.97–1.00, respectively) (Goodman et al., 2017) Intention to share for both primary and secondary use depends on the following variables: Higher intention Younger age (people aged 30 and under), higher education level (those having a tertiary-level qualification) and race (those self-identified as White) (Middleton, Milne, Thorogood, et al., 2019); Younger age (up to 40 years), religiosity (non-religious respondents) (Romano et al., 2021)	Intention to share for secondary use depends on the following variables: Personal experience with genetics and genetic exceptionalist views (increased nearly six times the willingness to donate their anonymous DNA and medical information for research than other respondents) (Middleton, Milne, Howard, et al., 2019); Familiarity with the concepts of DNA, genetics, and genomics and trust in multiple actors were associated with willingness to donate DNA and medical information (Middleton et al., 2020); Having high levels of trust in all individuals/organization (OR 22.5, 95% CI: 15.5–32.5), having high levels of trust in medical professionals, moderate trust in university researchers and low trust in company researchers and own government) (OR 6.2, 95% CI: 5.2–7.4) (Milne et al., 2019). Intention to share for both primary and secondary use depends on the following variables: Being familiar with, or having a personal experience of, genetics/genomics (Middleton, Milne, Thorogood, et al., 2019)
Miscellaneous data	Primary use: Higher intention was reported for the following variables: Respondents' willingness to share “My dispensed medications” increased with age (Montelius et al., 2008) Secondary use: Higher intention was reported for the following variables: Older age (those aged ≥50 years), higher education, and vaccination status (being vaccinated against COVID-19 at least once, respondents who were ever vaccinated being 4.20 times more likely (95% CI: 3.21–5.48, p = 0.000) to be generally supportive of data-sharing than those unvaccinated) (Savic Kallesoe et al., 2023)	Intention to share for primary use depends on the following variables: Societal stigma strongly correlated with decreased non-psychiatric medication sharing, while self-stigma was strongly correlated with decreased psychiatric medications sharing (Yu et al., 2021); Intention to share for secondary use depends on the following variables: Higher willingness to share was associated with higher levels of satisfaction with the NHS, personal experience of mental illness, diagnosis with depression, obsessive-compulsive disorder, personality disorder or bipolar disorder (Kirkham et al., 2022); communication about prosocial benefit or social-life-enabling benefit of the app, higher perceived risk of the disease (Jörling et al., 2023)

Abbreviations: OR, odds ratio; aOR, adjusted odds ratio; CI, confidence interval; aRP, adjusted relative proportions; r, correlation coefficient; M, mean; SD, standard deviation; EHR, electronic health records; HC, healthcare; EMR, electronic medical record.