Digital health and primary care: Past, pandemic and prospects.

This article reflects on the breadth of digital developments seen in primary care over time, as well as the rapid and significant changes prompted by the COVID-19 crisis. Recent research and experience have shone further light on factors influencing the implementation and usefulness of these approaches, as well as unresolved challenges and unintended consequences. These are considered in relation to not only digital technology and infrastructure, but also wider aspects of health systems, the nature of primary care work and culture, patient characteristics and inequalities, and ethical issues around data privacy, inclusion, empowerment, empathy and trust. Implications for the future direction and sustainability of these approaches are discussed, taking account of novel paradigms, such as artificial intelligence, and the growing capture of primary care data for secondary uses. Decision makers are encouraged to think holistically about where value is most likely to be added, or risks being taken away, when judging which innovations to carry forward. It concludes that, while responding to this public health emergency has created something of a digital 'big bang' for primary care, an incremental, adaptive, patient-centered strategy, focused on augmenting rather than replacing existing services, is likely to prove most fruitful in the longer term.

The ethics and value of contact tracing apps: International insights and implications for Scotland's COVID-19 response.

The COVID-19 pandemic has put health systems, economies and societies under unprecedented strain, calling for innovative approaches. Scotland's government, like those elsewhere, is facing difficult decisions about how to deploy digital technologies and data to help contain, control and manage the disease, while also respecting citizens' rights. This paper explores the ethical challenges presented by these methods, with particular emphasis on mobile apps associated with contact tracing. Drawing on UK and international experiences, it examines issues such as public trust, data privacy and technology design; how changing disease threats and contextual factors can affect the balance between public benefits and risks; and the importance of transparency, accountability and stakeholder participation for the trustworthiness and good-governance of digital systems and strategies. Analysis of recent technology debates, controversial programmes and emerging outcomes in comparable countries implementing contact tracing apps, reveals sociotechnical complexities and unexpected paradoxes that warrant further study and underlines the need for holistic, inclusive and adaptive strategies. The paper also considers the potential role of these apps as Scotland transitions to the 'new normal', outlines challenges and opportunities for public engagement, and poses a set of ethical questions to inform decision-making at multiple levels, from software design to institutional governance.

#Deathbedlive: the end-of-life trajectory, reflected in a cancer patient's tweets.

BACKGROUND: Understanding physical and psycho-social illness trajectories towards the end of life can help in the planning of palliative and supportive care. With terminal patients increasingly seeking and sharing health information and support via social media, it is timely to examine whether these trajectories are reflected in their digital narratives. In this exploratory study, we analysed the Twitter feed of prominent cancer sufferer and physician, Kate Granger, over the final 6 months of her life. METHODS: With the consent of Kate's widower, Chris Pointon, 1628 Twitter posts from @GrangerKate were manually screened. The 550 tweets judged relevant to her disease were qualitatively content analysed with reference to the six modifiable dimensions of the patient experience in Emanuel and Emanuel's 'framework for a good death'. The frequency of each tweet category was charted over time and textual content was examined and cross-referenced with key events, to obtain a deeper understanding of its nature and significance. RESULTS: Tweets were associated with physical symptoms (N = 270), psychological and cognitive symptoms (N = 213), social relationships and support (N = 85), economic demands and care giving needs (N = 85), hopes and expectations (N = 51) and spiritual beliefs (N = 7). While medical treatments and procedures were discussed in detail, medical information-seeking was largely absent, likely reflecting Kate clinical expertise. Spirituality was expressed more as hope in treatments or "someone out there listening", than in religious terms. The high value of Kate's palliative care team was a dominant theme in the support category, alongside the support she received from her online community of fellow sufferers, friends, family and colleagues. Significant events, such as medical procedures and hospital stays generated the densest Twitter engagement. Transitions between trajectory phases were marked by changes in the relative frequency of tweet-types. CONCLUSIONS: In Kate's words, "the power of patient narrative cannot be underestimated". While this analysis spanned only 6 months, it yielded rich insights. The results reflect theorised end-of-life dimensions and reveal the potential of social media data and digital bio-ethnography to shine a light on terminal patients' lived experiences, coping strategies and support needs, suggesting new opportunities for enhancing personalised palliative care and avenues for further research.

Effectiveness of telemonitoring integrated into existing clinical services on hospital admission for exacerbation of chronic obstructive pulmonary disease: researcher blind, multicentre, randomised controlled trial.

OBJECTIVE: To test the effectiveness of telemonitoring integrated into existing clinical services such that intervention and control groups have access to the same clinical care. DESIGN: Researcher blind, multicentre, randomised controlled trial. SETTING: UK primary care (Lothian, Scotland). PARTICIPANTS: Adults with at least one admission for chronic obstructive pulmonary disease (COPD) in the year before randomisation. We excluded people who had other significant lung disease, who were unable to provide informed consent or complete the study, or who had other significant social or clinical problems. INTERVENTIONS: Participants were recruited between 21 May 2009 and 28 March 2011, and centrally randomised to receive telemonitoring or conventional self monitoring. Using a touch screen, telemonitoring participants recorded a daily questionnaire about symptoms and treatment use, and monitored oxygen saturation using linked instruments. Algorithms, based on the symptom score, generated alerts if readings were omitted or breached thresholds. Both groups received similar care from existing clinical services. MAIN OUTCOME MEASURES: The primary outcome was time to hospital admission due to COPD exacerbation up to one year after randomisation. Other outcomes included number and duration of admissions, and validated questionnaire assessments of health related quality of life (using St George's respiratory questionnaire (SGRQ)), anxiety or depression (or both), self efficacy, knowledge, and adherence to treatment. Analysis was intention to treat. RESULTS: Of 256 patients completing the study, 128 patients were randomised to telemonitoring and 128 to usual care; baseline characteristics of each group were similar. The number of days to admission did not differ significantly between groups (adjusted hazard ratio 0.98, 95% confidence interval 0.66 to 1.44). Over one year, the mean number of COPD admissions was similar in both groups (telemonitoring 1.2 admissions per person (standard deviation 1.9) v control 1.1 (1.6); P=0.59). Mean duration of COPD admissions over one year was also similar between groups (9.5 days per person (standard deviation 19.1) v 8.8 days (15.9); P=0.88). The intervention had no significant effect on SGRQ scores between groups (68.2 (standard deviation 16.3) v 67.3 (17.3); adjusted mean difference 1.39 (95% confidence interval -1.57 to 4.35)), or on other questionnaire outcomes. Conclusions In participants with a history of admission for exacerbations of COPD, telemonitoring was not effective in postponing admissions and did not improve quality of life. The positive effect of telemonitoring seen in previous trials could be due to enhancement of the underpinning clinical service rather than the telemonitoring communication. TRIAL REGISTRATION: ISRCTN96634935. FUNDING: The trial was funded by an NHS applied research programme grant from the Chief Scientist Office of the Scottish government (ARPG/07/03). The funder had no role in study design and the collection, analysis, and interpretation of data and the writing of the article and the decision to submit it for publication. NHS Lothian supported the telemonitoring service and the clinical services.