Tightrope walking towards maximising secondary uses of digitised health data: a qualitative study.

BACKGROUND: Timely progress with attaining benefits from Health Information Technology (HIT) investments requires UK policymakers and others to negotiate challenges in developing structures and processes to catalyse the trustworthy secondary uses of HIT-derived data. AIMS: We aimed to uncover expert insights into perceived barriers and facilitators for maximising safe and secure secondary uses of HIT-derived data in the UK. METHODS: We purposively selected individuals from a range of disciplines in the UK and abroad to participate in a thematically analysed, semi-structured interview study. RESULTS: We identified a main theme of 'tightrope walking' from our interviews (n = 23), reflecting trying to balance different stakeholders' views and priorities, with sub-themes of 'a culture of caution', 'fuzzy boundaries' and 'cultivating the ground'. The public interest concept was fundamental to interviewees' support for secondary uses of HIT-derived data. Small scale and prior collaborative relationships facilitated progress. Involving commercial companies, improving data quality, achieving proportionate governance and capacity building remained challenges. CONCLUSIONS: One challenge will be scaling up data linkage successes more evident internationally with regional population datasets. Within the UK, devolved nations have the advantage that 'small scale' encompasses national datasets. Proportionate governance principles developed in Scotland could be more widely applicable, while lessons on public engagement might be learned from Western Australia. A UK policy focus now should be on expediting large-scale demonstrator projects and effectively communicating their findings and impact. Progress could be jeopardised if national data protection laws were superseded by any Europen Union-wide regulation governing personal data.

A systematic scoping review of the domains and innovations in secondary uses of digitised health-related data.

BACKGROUND: Substantial investments are being made in health -information -technology (HIT) based on assumptions that these systems will save costs through increased quality, safety and efficiency of care provision. Whilst -short-term -benefits have often proven difficult to demonstrate, there is increasing interest in achieving benefits in the medium and long term through secondary uses of -HIT-derived data. AIMS: We aimed to describe the range of secondary uses of HIT-derived data in the international literature and identify innovative developments of particular relevance to UK policymakers and managers. METHODS: We searched nine electronic databases to conduct a systematic scoping review of the international literature and augmented this by consulting a range of experts in the field. RESULTS: Reviewers independently screened 16,806 titles, resulting in 583 -eligible studies for inclusion. Thematic organisation of reported secondary uses was -validated during expert consultation (n = 23). A primary division was made between patient-identifiable data and datasets in which individuals were not identified. Secondary uses were then categorised under four domain headings of: i) research; ii) quality and safety of care provision; iii) financial management; and iv) healthcare professional education. We found that innovative developments were most -evident in research where, in particular, dataset linkage studies offered important -opportunities for exploitation. CONCLUSIONS: Distinguishing patient-identifiable data from aggregated, de-identified datasets gives greater conceptual clarity in secondary uses of HIT-derived data. Secondary uses research has substantial potential for realising future benefits through generating new medical knowledge from dataset linkage studies, developing precision medicine and enabling cross-sectoral, evidence-based policymaking to benefit population-level well-being.

Structuring and coding in health care records: a qualitative analysis using diabetes as a case study.

BACKGROUND: Globally, diabetes mellitus presents a substantial and increasing burden to individuals, health care systems and society. Structuring and coding of information in the electronic health record underpin attempts to improve sharing and searching for information. Digital records for those with long-term conditions are expected to bring direct and secondary uses benefits, and potentially to support patient self-management. AIMS AND OBJECTIVES: We sought to investigate if how and why records for adults with diabetes were structured and coded and to explore a range of UK stakeholders' perceptions of current practice in the National Health Service. METHODS: We carried out a qualitative, theoretically informed case study of documenting health care information for diabetes in family practice and hospital settings in England, using semi-structured interviews, observations, systems demonstrations and documentary data. RESULTS: We conducted 22 interviews and four on-site observations. With respect to secondary uses - research, audit, public health and service planning - interviewees clearly articulated the benefits of highly structured and coded diabetes data and it was believed that benefits would expand through linkage to other datasets. Direct, more marginal, clinical benefits in terms of managing and monitoring diabetes and perhaps encouraging patient self-management were also reported. We observed marked differences in levels of record structuring and/or coding between family practices, where it was high, and the hospital. We found little evidence that structured and coded data were being exploited to improve information sharing between care settings. CONCLUSIONS: Using high levels of data structuring and coding in records for diabetes patients has the potential to be exploited more fully, and lessons might be learned from successful developments elsewhere in the UK. A first step would be for hospitals to attain levels of health information technology infrastructure and systems use commensurate with family practices.

Cancer-related psychosocial research: what are the perspectives of cancer care centre users on participation?

PURPOSE: To explore the perspectives of cancer care centre users on participation in psychosocial research to inform research design and ethics. METHODS: The study is based on a qualitative research design. Fourteen semistructured interviews were carried in people diagnosed with cancer and carers. The interview included four main questions about practical barriers to participation, types of research design, motivating factors and the conduct of research in a cancer care support setting. The data were analysed using qualitative content analysis. RESULTS: Interviewees demonstrated a willingness to participate in psychosocial research within certain circumstances. There were no practical barriers identified, although they considered payment for research-related travel important. The most acceptable research design was the face-to-face interview and the least preferred was the randomised control trial. The factors that motivated participation were altruism, valuing research, and making a contribution to the centre. Interviewees supported the conduct of research in cancer care support centres conditional upon delaying recruitment during the initial months of users' visits and its need to be discreet to avoid deterring visitors from accessing the centre. CONCLUSIONS: The study concludes that the personal interaction between participants and researchers is the most important feature of decision-making by patients/carers to join studies. Taking into account the perspectives of people affected by cancer during the early stages of research design may enhance recruitment and retention and can contribute to the development of research protocols and ethics.

Rehabilitation and development after childhood cancer: can the need for physical exercise be met?

Clinical and experimental evidence attests to the neurological and psychological benefits of physical exercise. Prescribing exercise for children after cancer has the potential to facilitate recovery, performance and development, with consequent improvement in quality of life and long-term outcome. However, could a school take up the prescription for a child's individual exercise programme? As a preliminary to an intervention study, all primary and secondary schools in two Scottish regions were surveyed. The aim was to evaluate the utility of prescribing exercise as part of a child's individual rehabilitation plan and to investigate awareness in schools of the potential benefits of exercise for cognition and behaviour. Approximately half the respondents indicated that extra physical exercise sessions could be incorporated into the school day. The main difficulties preventing such inclusion were identified as a lack of staff for supervision and timetabling problems. However, there was also a high level (>70%) of lack of information about what a child could be expected to do after cancer. Further, more respondents (approximately 60%) anticipated benefits of exercise for social development than for academic progress (approximately 35%). These results emphasize the necessity of clear and specific liaison with a school when planning and implementing a child's long-term rehabilitation programme.