Patients', carers' and healthcare providers' views of patient-held health records in Kerala, India: A qualitative exploratory study.

Abstract

Poor medical information transfer across healthcare visits and providers poses a potential threat to patient safety. Patient-held health records (PHRs) may be used to facilitate informational continuity, handover communication and patient self-management. However, there are conflicting opinions on the effectiveness of PHRs, other than in maternal and child care. Moreover, the experiences of users of PHRs in low- and middle-income countriesare critical in policy decisions but have rarely been researched. This study aimed to explore similarities and differences in the perspectives of patients, carers and healthcare providers (HCPs) on the current PHRs for diabetes and hypertension in Kerala. A qualitative design was used comprising semistructured interviews with patients with diabetes/hypertension (n = 20), carers (n = 15) and HCPs (n = 17) in Kerala, India. Data were analysed using thematic analysis. Themes generated regarding the experiences with PHRs from each user group were compared and contrasted. The themes that arose were organized under three headings: use of PHRs in everyday practice; the perceived value of PHRand where practice and value conflict. We found that in the use of PHRs in everyday practice, multiple PHRs posed challenges for patients carrying records and for HCPs locating relevant information. Most carers carried all patients' past PHRs, while patients made decisions on which PHR to take along based on the purpose of the healthcare visit. HCPs appreciated having PHRs but documented limited details in them. The perceived value of PHRs by each group for themselves was different. While HCPs placed value on PHRs for enabling better clinical decision-making, preventing errors and patient safety, patients perceived them as transactional tools for diabetes and hypertension medications; carers highlighted their value during emergencies. Our findings suggest that users find a variety of values for PHRs. However, these perceived values are different for each user group, suggesting minimal functioning of PHRs for informational continuity, handover communication and self-management. Patients and carers were involved during the pilot testing of topic guides, consent and study information sheets. Patients and carers gave their feedback on the materials to ensure clarity and appropriateness within the context.