A qualitative exploration of patients’ experiences, needs and expectations regarding online access to their primary care record

McMillan, Brian; Davidge, Gail; Brown, Laurence; Lyons, Moira; Atherton, Helen; Goulding, Rebecca; Mold, Freda; Morris, Rebecca; Sanders, Caroline

doi:10.1136/bmjopen-2020-044221

Cited by 21 publications

(30 citation statements)

References 15 publications

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“…Our study was focused on the primary care staff perspective, but importantly, the findings support previous research from the patient perspective which emphasises the opportunities and challenges of patient access to EHRs. Studies exploring this perspective have reported similar issues; for example secure access and confidentiality, implications for health inequalities, and benefits for self-monitoring [ 34 , 38 ].…”

Section: Discussionmentioning

confidence: 99%

What do primary care staff think about patients accessing electronic health records? A focus group study

Louch

Albutt

Smyth

et al. 2022

BMC Health Serv Res

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Background Patients have expressed a growing interest in having easy access to their personal health information, and internationally there has been increasing policy focus on patient and care records being more accessible. Limited research from the UK has qualitatively explored this topic from the primary care staff perspective. This study aimed to understand what primary care staff think about patients accessing electronic health records, highlighting errors in electronic health records, and providing feedback via online patient portals. Methods A focus group study involving 19 clinical and non-clinical primary care staff. Primary care practices were purposively sampled based on practice size and the percentage of patients using online services. Data were analysed inductively using reflexive thematic analysis. Results Three themes were generated: (1) Information – what, why and when? (2) Changing behaviours and protecting relationships, and (3) Secure access and safeguarding. The emotional considerations and consequences for staff and patients featured prominently in the data as an overarching theme. Conclusions Primary care staff described being invested and supportive of patients accessing their electronic health records, and acknowledged the numerous potential benefits for safety. Uncertainty around the parameters of access, the information available and what this might look like in the future, processes for patients highlighting errors in records, relational issues, security and safeguarding and equitable access, were key areas warranting examination in future research.

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Section: Discussionmentioning

confidence: 99%

What do primary care staff think about patients accessing electronic health records? A focus group study

Louch

Albutt

Smyth

et al. 2022

BMC Health Serv Res

View full text Add to dashboard Cite

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“…Open notes offer patients unprecedented transparency to their healthcare. Encouragingly, a growing body of research in countries where the practice is advanced demonstrates that the majority of patients who access their notes derive multiple benefits including greater understanding about their treatments, better recall about treatment plans, greater engagement in their care, and enhanced understanding about the rationale for prescribed treatments and interventions 78 79 81 87–89. However, as this paper has argued, there may also be unintended negative consequences associated with this change of practice, including the potential to increase nocebo effects 90.…”

Section: Ethical Implicationsmentioning

confidence: 90%

Sharing online clinical notes with patients: implications for nocebo effects and health equity

Blease

2022

J Med Ethics

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Patients in around 20 countries worldwide are now offered online access to at least some of their medical records. Access includes test results, medication lists, referral information, and/or the very words written by clinicians (so-called ‘open notes’). In this paper, I discuss the possibility of one unintended negative consequence of patient access to their clinical notes—the potential to increase ‘nocebo effects’. A growing body of research shows that nocebo effects arise by engaging perceptual and cognitive processes that influence negative expectancies, and as a consequence, adverse health effects. Studies show that increased awareness about the side effects of medications, the framing of information and the socioemotional context of care can increase the risk of nocebo effects. Connecting research into the nocebo effect with open notes provides preliminary support for the hypothesis that patient access to clinical notes might be a forum for facilitating unwanted nocebo effects. Furthermore, current findings indicate that we might expect to see systematic differences in how nocebo effects are experienced among different patient populations. The ethical implications of the tension between transparency and the potential for harm are discussed, with an emphasis on what open notes might mean for justice and equity in clinical care for a range of already marginalised patient populations. I argue that to resolve these challenges does not thereby justify ‘closed notes’, and conclude with suggestions for how health systems and clinicians might adapt to this innovation to reduce the risk of potential nocebo effects arising via this novel route.

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“…GPs have previously expressed concerns that patient access to records could increase risks of litigation and require them to change the way they write on the records so that patients can understand them 39 . Patients have expressed a need for support and training in using and understanding the online record 40 . A systematic review of patient record sharing in UK secondary care found that the approach of giving information to patients almost exclusively verbally was insufficient; and patients should have access to notes, but that simply allowing full access, without explanation or summary, is also insufficient 41 .…”

Section: Summary Report Comparison With Literaturementioning

confidence: 99%

The person-based development and realist evaluation of a summary report for GP consultations

et al. 2022

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Background: Use of telephone, video and e-consultations is increasing. These can make consultations more transactional. This study aimed to develop a complex intervention to address patients’ concerns more comprehensively in general practice and test the feasibility of this in a cluster-randomised framework. The complex intervention used two technologies: a patient-completed pre-consultation form used at consultation opening and a doctor-provided summary report provided at consultation closure. This paper reports on the development and realist evaluation of the summary report. Methods: A person-based approach was used to develop the summary report. An electronic protocol was designed to automatically generate the report after GPs complete a clinical template in the patient record. This was tested with 45 patients in 3 rounds each, with iterative adjustments made based on feedback after each round. Subsequently, an intervention incorporating the pre-consultation form with the summary report was then tested in a cluster-randomised framework with 30 patients per practice in six practices: four randomised to intervention, and two to control. An embedded realist evaluation was carried out. The main feasibility study results are reported elsewhere. Results: Intervention Development: 15 patients were recruited per practice. Eight patients and six GPs were interviewed and 18 changes made. The summary report improved substantially; GPs and patients in the final practice were more satisfied with the report than the first practice. Realist evaluation: The summary was most useful for consultations when safety-netting advice was important or with multiple complex follow-up steps in patients who have difficulty remembering or communicating. It generated greater clarity on the follow-up and greater patient empowerment and reassurance. Conclusions: The person-based approach was successful. The summary report creates clarity, empowerment and reassurance in certain consultations and patients. As it takes a few minutes per patient, GPs prefer to select patients who will benefit most.

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A qualitative exploration of patients’ experiences, needs and expectations regarding online access to their primary care record

Cited by 21 publications

References 15 publications

What do primary care staff think about patients accessing electronic health records? A focus group study

What do primary care staff think about patients accessing electronic health records? A focus group study

Sharing online clinical notes with patients: implications for nocebo effects and health equity

The person-based development and realist evaluation of a summary report for GP consultations

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