Factors influencing individuals’ personal health information privacy concerns. A study in Ghana

Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review

“…Specific data privacy and security concerns identified included confidentiality breaches [ 16 , 59 ] often linked to the risk of reidentification [ 16 , 60 ], or ineffective anonymity processes [ 55 , 61 ]; unauthorized, or unknown data access [ 18 , 39 , 42 , 44 - 46 , 51 , 62 , 63 ]; data misuse and abuse [ 3 , 15 , 16 , 34 , 47 , 55 , 59 , 63 , 64 ], particularly for stigmatizing, or sensitive health conditions [ 45 , 47 , 55 ]; data or identity theft and fraud [ 7 , 15 , 16 , 18 , 31 , 39 , 44 , 58 , 63 - 67 ]; and the unauthorized reuse or future use of collected data [ 15 , 16 , 18 , 42 , 59 , 60 , 65 , 68 ] that extends beyond the scope of originally intended and consented purposes [ 59 , 68 ]. The latter point indicates how data sharing practices often operate in “largely unchartered territory and, as such, new harms may emerge that we cannot yet foresee” [ 65 ], accentuating the importance of dynamic consent that enables progressive patient choice as later discussed [ 47 ].…”

“…For example, in 1 study, all participants (100%) stated that they would like to be able to control what entities access their EHR [ 79 ]. Perceived control also appears to lower privacy concerns [ 59 , 62 , 69 , 104 ], with clear public preferences for controlling the type, duration (eg, not for the duration, or any longer than the research study [ 43 ]), and level of access depending on different data user types or individuals or organizations and data sharing purposes [ 18 , 44 , 73 ]. Thus, as noted by Courbier et al [ 66 ], being in favor of data sharing practices and wanting more control are not contradictory but rather parallel requirements.…”

“…Strengths of this research include its application of a recognized systematic review process, the inclusion of updated literature following COVID-19 including international literature from developing countries, responding to criticisms that existing studies have largely concentrated on developed countries only [ 62 ], and synthesis of historically disparate literature into 1 corpus of information. However, its limitations must also be acknowledged.…”

Walk a mile in my shoes: perspectives towards sharing of health and experience data among individuals living with sickle cell disorder

“…To address these core questions, a semi-structured topic guide informed by existing literature ( 25 ) was co-designed with a patient research partner (Z.G.S.) who the authors engaged with via the Sickle Cell Society.…”

“…Survey questions were co-developed in partnership between the research team and the patient research partner, a copy of which is provided in Appendix 1 . In addition to primary questions concerning (I) what ‘feeling well’ looks like for someone with SCD; (II) how this could be best monitored and reported day-to-day; (III) which, if any, data respondents believed HCPs should pay more attention to; and (IV) which, if any, types of data respondents would be willing to share, with whom, and under which conditions, we additionally collected responses concerning SCD activity, including the number of sickle cell crises and hospitalisations respondents had recently experienced; in addition to basic demographic characteristics of respondents including gender, age and ethnicity, on account of acknowledged differences in data sharing attitudes across gender, age and ethnicity ( 7 , 20 , 25 ).…”