Health-Related Quality of Life for individuals with hepatitis C: A narrative review.

BACKGROUND The assessment of Health-Related Quality of Life (HRQoL) in hepatitis C (HCV) infected individuals continues to gain importance. However, rarely do reviews of this literature consider quantitative and qualitative accounts of HRQoL collectively, which only allows partial insight into the topic. This narrative review aims to address this gap in the literature. METHODS Literature searches were conducted using seven databases with two separate search strategies, and results assessed for eligibility using specific inclusion/exclusion criteria; a data extraction sheet was used to identify the dominant themes for each research paradigm which were then distilled to key findings to construct the narrative. RESULTS Quantitative investigation reveals a low HRQoL in individuals with HCV due to a complex multifactorial cause. During treatment for HCV, a further transient reduction is observed, followed by improvement if a sustained virological response is achieved. Qualitative data provide a recognisable voice to the everyday challenges experienced by individuals with HCV including insights into diagnosis and stigmatisation, contextualising how a reduced HRQoL is experienced day-to-day. Methodological limitations of these findings are then discussed. Much of the quantitative data has little relevance to current substance users as they are excluded from most trials, and appraisal of the qualitative literature reveals a marked difference in the lived experience of HCV infected current substance users and that of other HCV groups. CONCLUSION Concurrent analysis of quantitative and qualitative paradigms provides a deeper understanding of the true burden of HCV illness on HRQoL. Greater utilisation of qualitative research within international clinical guidelines is likely to be of benefit in identifying relevant HRQoL outcomes for substance users.

Health-related quality of life: implications for critical care interventional studies and why we need to collaborate with patients.

Purpose of review: Health-related quality of life (HRQoL) is an important patient-reported outcome measure following critical illness. ‘Validated’ and professionally endorsed generic measures are widely used to evaluate critical care intervention and guide practice, policy and research. Although recognizing that they are ‘here to stay’, leading QoL researchers are beginning to question their ‘fitness for purpose’. It is therefore timely to review critiques of their limitations in the wider healthcare and social science literatures and to examine the implications for critical care research including, in particular, emerging interventional studies in which HRQoL is the primary outcome of interest. Recent findings: Generic HRQoL measures have provided important yet limited insights into HRQoL among survivors of critical illness. They are rarely developed or validated in collaboration with patients and cannot therefore be assumed to reflect their experiences and perspectives. Summary: Collaboration with patients is advocated in order to improve the interpretation and utility of such data. Failure to do so may result in important study effects being overlooked and the dismissal of potentially useful interventions.

Consequences of big data on the individual: Interview

The speed with which data has moved from being scarce, expensive and valuable, thus justifying detailed and careful verification and analysis to a situation where the streams of detailed data are almost too large to handle has caused a series of shifts to occur. Legal systems already have severe problems keeping up with, or even in touch with, the rate at which unexpected outcomes flow from information technology. The capacity to harness massive quantities of existing data has driven Big Data applications until recently. Now the data flows in real time are rising swiftly, become more invasive and offer monitoring potential that is eagerly sought by commerce and government alike. The ambiguities as to who own this often quite remarkably intrusive personal data need to be resolved – and rapidly - but are likely to encounter rising resistance from industrial and commercial bodies who see this data flow as ‘theirs’. There have been many changes in ICT that has led to stresses in the resolution of the conflicts between IP exploiters and their customers, but this one is of a different scale due to the wide potential for individual customisation of pricing, identification and the rising commercial value of integrated streams of diverse personal data. A new reconciliation between the parties involved is needed. New business models, and a shift in the current confusions over who owns what data into alignments that are in better accord with the community expectations. After all they are the customers, and the emergence of information monopolies needs to be balanced by appropriate consumer/subject rights. This will be a difficult discussion, but one that is needed to realise the great benefits to all that are clearly available if these issues can be positively resolved. The customers need to make these data flow contestable in some form. These Big data flows are only going to grow and become ever more instructive. A better balance is necessary, For the first time these changes are directly affecting governance of democracies, as the very effective micro targeting tools deployed in recent elections have shown. Yet the data gathered is not available to the subjects. This is not a survivable social model. The Private Data Commons needs our help. Businesses and governments exploit big data without regard for issues of legality, data quality, disparate data meanings, and process quality. This often results in poor decisions, with individuals bearing the greatest risk. The threats harbored by big data extend far beyond the individual, however, and call for new legal structures, business processes, and concepts such as a Private Data Commons. This Web extra is the audio part of a video in which author Marcus Wigan expands on his article "Big Data's Big Unintended Consequences" and discusses how businesses and governments exploit big data without regard for issues of legality, data quality, disparate data meanings, and process quality. This often results in poor decisions, with individuals bearing the greatest risk. The threats harbored by big data extend far beyond the individual, however, and call for new legal structures, business processes, and concepts such as a Private Data Commons.