Abstract
IntroductionNational Health Service (NHS) policy suggests that increasing usage of electronic personal health records (PHR) by patients will result in cost savings and improved public health, especially for people with long-term conditions. Some of the claimed benefits of PHRs are decreasing healthcare costs and improving patient outcomes, such as medication adherence (patients take their prescribed medication as agreed with their doctors). However, the evidence based to support these policy aspirations is limited and debatable.
Research questions
PHR design features are inevitably important, since a good PHR design should make the users achieve their health goals effortlessly, which is understandable and usable. It is important to understand whether patient and disease specific factors may have an impact upon PHR use and usability. This is particularly crucial for direct care delivery such as medication. Therefore, the primary research question of this study is:
RQ1: What features of PHRs to improve medication adherence in adults with long-term conditions are considered essential by users?
The secondary research questions of this study are:
RQ2: What theoretical model can describe and explain the interaction between the PHR design features and the patient and disease- specific factors, to help determine what works for whom in what circumstances?
RQ3: How patient and disease- specific factors mediate the impact of PHRs?
Patient specific factors: personality traits and sociodemographic.
Disease specific factors: progression, intervention type, polypharmacy.
Methods
A pragmatist mixed methodology was adopted because it allows for the holistic exploration and evaluation of the programme producing a more complete picture of the phenomena being studied.
This led to a convergent design using primarily qualitative methods. The qualitative research used interviews to collect purposively sampled data which was analysed using the Framework method to answer the research questions. Realist evaluation was used to construct the theoretical model that describes what works for whom and in what circumstances.
The quantitative research used a web-based survey to collect data which were analysed using descriptive statistics and correlation analysis. The findings were integrated in the form of joint displays and narratives per long-term condition group.
Results
The first outcome and contribution to knowledge of this study is a unique systematic review of the literature on the important design features of personal health records to improve medication adherence for patients with long-term conditions demonstrating that:
The use of a PHR has increased medication adherence in 13 out of 15 studies, whereas the other 2 studies has shown no difference.
The identified design features are reminders, education, personalisation and tailoring, feedback and alerts, gamification, medication management, medical appointment management, diary and self-monitoring, health condition
management, set goals, patient’s blog and tethered.
The most frequently identified conditions were HIV and diabetes.
This study conducted 42 interviews and surveys with people with heart disease, asthma and diabetes in order to answer the research questions.
This study is the first to identify the essential design features of PHRs to improve medication adherence in adults with long-term conditions per long-term condition cohort.
The essential design features of diabetes cohort are: recording daily patterns of health related measurements, carbohydrate identification and trend
The essential design features of asthma cohort are: health tracking, maintaining a diary and recording daily patterns of health related measurements and graphical quality
The essential design features of heart disease cohort are: health tracking, reminders and quantifying adherence score
This study is the first to identify the most used PHR design features in terms of improving medication adherence in adults with long-term conditions per long-term condition cohort.
The most used design features of diabetes cohort are: trend, recording daily patterns of health related measurements, data share, diary, reminders and graphical quality
The most used design features of asthma cohort are: health tracking, diary and patterns, reminders, graphical quality and medication inventory
The most used design features of heart disease cohort are: health tracking, reminders, data share, recording daily patterns of health related measurements and quantifying adherence score
Three original theoretical models were developed using realist evaluation, one per long-term condition cohort, describing the interaction between the PHR design features and the patient and disease specific factors, to help determine what works for whom in what circumstances.
New standardised definitions of PHR features were developed. The lack of these was identified in the literature review and definitions have been proposed for more than 20 features overall during the analysis of the three cohorts.
The study used a novel combination of scales to assess at the same time the medication adherence (MAQ), health-related quality of life (WHOQoL-BREF) and the personality traits (BFI-2X-S). These scales were previously used alone or in combinations of two but never all three together. Using the BFI-2X-S scale the personality traits of the participants were measured. Sociodemographic information were gathered. Although some relationships were identified, there was nothing conclusive so these findings may inform future studies. Using the MAQ and WHOQoL-BREF scales the medication adherence, and health related quality of life were measured. Although some relationships were identified, there was nothing conclusive so these findings may inform future studies.
Limitations
This study was necessarily limited by the time available to a single research student, within the overall constraint of University regulations on completion of PhD work. Participant recruitment was challenging in this study and due to the voluntarily nature of participation, selection bias could occur. This study is using the term multimorbidity to describe both multimorbidity and comorbidity, in other words to indicate the occurrence of more than one long-term conditions on a same person, either deriving from the primary long-term condition or simply co-existing. Although MAQ is a reliable tool to measure medication adherence, it is often found lacking in sensitivity comparing with the MMAS-8. The qualitative coding and analysis was not subjected to inter-rater reliability testing.The identification of design features is qualitative, not based on a statistically significant analysis, so cannot be taken as generalisable and is subject to quantitative validation.
Conclusions
Based on the interviews and the PPI verification this study has identified the essential design features of PHRs for the three groups of patients. Using the realist evaluation, three different theoretical models were generated, based on the mixed data from the interviews and survey
| Date of Award | Jun 2021 |
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| Original language | English |
| Awarding Institution |
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| Supervisor | Helena Herrera (Supervisor), Alice Good (Supervisor) & Philip James Scott (Supervisor) |