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

Abstract Introduction 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 countries are critical in policy decisions but have rarely been researched. Aim 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. Methods 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. Results 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 PHR and 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. Conclusion 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. Patient and Public Involvement 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.


| INTRODUCTION
Patient-held health records (PHRs) contain patients' medical information documented by healthcare providers (HCPs) to reflect the healthcare services received by a patient. 1 PHRs serve as a formal record for information sharing usually carried to healthcare visits by the patient or carers. 2,3 Usually, HCPs document health assessments, treatment plans and health services received by patients in these records. 4 Despite low levels of evidence of improved maternal and child health outcomes, 5 women, carers and HCPs value MCH records. [6][7][8] However, there is limited evidence of improvement in health outcomes following the use of PHRs in noncommunicable diseases (NCDs) in low-and middle-income countries (LMICs). 9,10 PHRs can be tailored for specific purposes such as to inform and involve patients in their care and to aid in self-management, to improve handover communication and informational continuity of care across healthcare visits and HCPs. 2,11 The availability of patient medical information for HCPs forms the basis of informational continuity of care. 12 With the increase of NCD burden in LMICs, patients requiring long-term care and repeated encounters with HCPs are increasing. 13 This in turn necessitates informational continuity for patient management and safety. A Mongolian study described the use of a paper-based PHR (booklet) for information transfer across HCPs for patients with NCDs. 14 PHRs also have significance for patients/ carers with chronic NCDs as they need clear direction on optimal selfmanagement. There is limited literature regarding the usefulness of PHRs for patients with NCDs from LMICs. 15 The National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular diseases & Stroke (NPCDCS) in India was introduced in recognition of the growing burden of NCDs. The programme has contributed to an improvement in screening facilities, access to and availability of medications for NCDs. 16 However, there remain considerable gaps in both the patient awareness and patient control of major risk factors for NCDs such as diabetes mellitus and hypertension. 17,18 Kerala, the site of the current study, has been a relatively better-performing state on health indicators such as mortality rates. 19 This state has been experiencing a rapid epidemiologic transition, resulting in a huge burden of NCDs. 20 Patients tend to visit different healthcare facilities (public and private) and HCPs, leading to fragmentation of medical information transfer across providers. 10,21 No paper-based patient-level facility-based records are used in outpatient (OP) settings in public healthcare facilities in Kerala. A previous study in 2014 in Kerala found that disparate pieces of paper given to patients for patient-held documentation were valued and kept safe by patients and when their use by clinicians was clear to patients, they carried them to all their clinic visits. 22 Additionally, most patients in this study reported having little or no information about self-management of their NCD. 22 After reviewing the results, an experts' meeting suggested having a PHR for patients with NCDs to improve handover communication and informational continuity between providers and patients/carers in Kerala. 22 Implementation of electronic health records in the public health system has become a priority in India. 23 Within the context of the ongoing implementation of electronic health records in Kerala, it is important to investigate the use and perceived value of PHR for patients, carers and HCPs. 24 The findings will guide policy decisions as to whether paper-based PHRs should be continued or replaced by another system. Furthermore, given the prevalence of paper-based PHRs in many LMICs, lessons learnt in one state in India would have implications throughout India and other LMICs.
Studies from HIC have reported on the patients', carers' and HCPs' perspectives on PHRs. A few qualitative studies have shown that patients valued having PHRs as a record of their condition. Other practical benefits of PHRs described by patients include the role as an aide-memoire, as a tool for communicating with HCPs and in improving self-management. 9,11 However, studies have also shown that when the intended purpose of the PHR is unclear to the users, then the value of PHRs is diminished for the users. Patients reported that when not having clarity on whose (patients'/HCPs') responsibility it is to record in PHRs or what the importance of information for patients/HCPs for self-management or continuity of care is, PHRs are used suboptimally. HCPs' experiences in using PHRs from studies performed in HIC show that most HCPs appreciate the benefits of PHRs in improving the availability of medical information; however, the recording of PHRs and the use of PHRs by HCPs were low. 25

| Settings
We conducted the study in Kerala from February to November 2020.
In 2017, the Government of Kerala initiated the 'Aardram Mission' to transform and mobilize the State's public healthcare system to meet the current health challenges. One of the objectives of the 'Aardram Mission' is the decentralization of healthcare from the secondary and tertiary levels to primary care-led services and the initiation of population-level activities to address the impact of NCDs, especially hypertension and diabetes. 31

| Study participants, sampling and recruitment
Three groups of participants were identified for the study: patients with diabetes and hypertension, carers and HCPs. In the pre-COVID phase, the study was conducted at two FHCs in the Alappuzha district, Kerala, which is one of the first districts where the NPCDCS was  Third, purposive sampling was used to recruit HCPs working in public healthcare facilities in a range of districts, rural and urban locations and experience with electronic health records, and snowball T A B L E 1 Patient-held health records available with patients in this study sample.

Notebook
A plain notebook that is usually used for patients with chronic conditions such as diabetes mellitus (DM) or hypertension, mostly in the public health care facility, for HCPs to document their notes, medicines, etc.
NCD booklet or patient passbook from the family health centre Printed NCD booklets distributed from the public health care settings. These booklets have additional information for patients such as the diet plan, recommended physical activity and health promotion messages to refrain from smoking.
Medical prescription and lab tests Most HCPs in outpatient settings (both public and private) give patients a written or printed copy of their medication prescription. This usually contains the patient's demographic information, diagnosis and medication. Lab test results such as blood glucose results.
OP sheets/outpatient ticket or sheets Patients visiting public health hospitals or health centres receive an OP ticket that is used by the HCP to write their notes (provisional diagnosis), medications and treatment plan for the patient.
Diabetes booklet from a specialized diabetes centre (private) A patient-held booklet with the doctor's notes, prescriptions and additional health care information for patients from a private specialty centre.
F I G U R E 1 Diagrammatic representation of recruitment for the study. HCPs, healthcare providers. sampling 38 was used as a strategy to recruit more HCPs by asking HCPs at the end of interviews to recommend other HCPs.

| Data analysis
We used an iterative thematic approach [40][41][42] to analysis, which focused on analysing interviews in their entirety and identifying themes related to patients', carers' and HCPs' experiences of using PHRs. A predominantly inductive approach to coding was followed. The first author coded three interviews from each group (patients, carers and HCPs) initially. The corresponding author then reviewed the transcripts and the generated codes.
The first author coded the full data set manually. The patients', carers' and HCPs' data had been coded separately and codes were

| FINDINGS
The characteristics of patients, carers and HCPs interviewed (n = 52) are summarized in Table 2. The 20 patients were aged between 41 and 70 years and 8 of them had both diabetes and hypertension.
Most of them were unemployed (n = 4) or engaged in minimum-wage employment (n = 11). Carers were aged between 28 and 56 years of age; 10 of them had parents/in-laws with diabetes/hypertension and others were spouses. HCPs included doctors (n = 13) and nurses (n = 4) in the public healthcare system. Their work experience ranged from less than a year to 20 years. Numerical pseudonyms are used when presenting quotes to ensure confidentiality. T A B L E 3 Themes and quotes.

Theme Illustrative quotes
We ask them to bring the notebook for next month's visit. We make sure that they carry them here (health centre) for monthly medication. Quote 1, HCP 14

Use of PHR in everyday practice
There is like a huge number (of people) in primary care, the dire need is to cater to them and finish the consultations soon. Then these issues as some doctors who work really hard will continue their work but some people are there don't work at all. Therefore, like some sort of hierarchy, which makes some work more, and they may have difficulty to give more care to patients. Then, there is no method anywhere, to improve the staffs those who work less. Even if they do not document well, there is no checks or penalty. In this situation, everywhere there is an issue like workload. It is only because of the difference in work not due to overwork. There are some systems where human resources are less, which is another issue. Quote 2, HCP 12, doctor with administrative and clinical responsibilities If I come for fever or something like that I will not bring this book [note-book]. I will get the medicines written on the prescription paper ('cheetu' But not everyone (patients) will carry records all time. There may be many papers also at times. Imagine having a long queue of patients outside your room and then someone brings in many papers, it will take time to go through them. I think for new patients we will have to sit through and check them, but with regular patients, it may be one or two here and there. Quote 4 HCP 1 If somebody asks for some record for a check-up, I have to search everywhere unless it is not arranged properly or kept in chronological order. If it is arranged in a file, my husband or mother-in-law can take it in my absence. Like for my mother-in-law, before we visited the Hepatologist, I arranged her records according to the date to understand the progress. Everything was available and it saved me a lot of going back and forth with records. However, I may not be always there in my home and I can tell them through the phone that I arranged it as on date. That much specific it is and so it helps me or others, each time with all the visits to doctors. Quote 5, Carer 3, 32 years, Female Perceived value of PHR for themselves But some patients may come without a prescription and tell three tablets for blood pressure, four tablets for some other problem, three yellow tablets, or round tablets. They are the more problematic persons for us. It becomes difficult then, they are having medicines for BP but we don't know which one and we may have to insist them to go and bring the papers. For them, it is their medicine, they probably don't realise that many tablets are round. Quote 6, HCP 6, doctor in FHC In situations, where a patient doesn't know the name of the drug or do not know if they have been taking medicines for BP, even if they say they are saying they take medicine and they don't know the name or dose or not have any documents like a past prescription, we consider him/her as a new patient. Quote 7, HCP 12, doctor in FHC Once a COPD (Chronic Obstructive Pulmonary Disease) patient came to FHC, we were not aware that he had this condition (COPD). The patient did not mention it nor did have any records with him. We (the doctor) prescribed him a particular antihypertensive. Later we understood he is a COPD patient. Then he came onto the next visit, with the prescription of a pulmonologist and we changed the anti-hypertensive for him. So now, the whole treatment was affected. According to the patients, the staff at healthcare facilities advised them to carry the PHR when they visit the doctor to collect their medications (Quote 10). Some HCPs described how PHRs could act as a way of tracking medication procurement by patients.
However, in contrast to the patients or carers, this was not the primary utility of PHRs described by the HCPs. Everyone knows there is very rush in the primary health centre (PHC). Initially, it will take more time, once the database (electronic health record) is fully activated, it will be very easy. Only at the pharmacy do they (patients/carers) get a printout, for the remaining [places] everywhere it is paperless. So patients need not carry any papers after eHealth is completed. Quote 14, HCP7, doctor in administration No, they don't ask like the names of medicines and for any papers for diabetes. They will just ask if I am taking any medicines regularly and then I tell them that I take medicines for pressure and cholesterol. Then they will say that is ok. Sometimes they will ask for medicine but I can't say that always. Mostly they don't ask. Quote

| Strengths and limitations
The use of qualitative methodology has revealed several key issues reflected in the user groups' use and perceived value of PHRs for handover communication. This is the first study to explore, compare and contrast the views of users of PHRs in Kerala. The study's credibility was strengthened using data triangulation, 61

| CONCLUSION
We argue that any healthcare tool will perform differently in a complex healthcare system. Hence the success of maternal and child health records such as vaccination cards for information storage and transfer may not be achieved with a PHR for diabetes/hypertension in a pluralistic health system. Our exploration of the use and the perceived value placed on PHRs found that currently the PHR served each group differently who then placed a different value on PHRs.
The utilitarian focus of the health system and HCPs in Kerala may lead to more disparity in health information transfer, and a more costly healthcare system as patient safety is compromised in the short-run and complications and multimorbidities rise in the long-term.