Innovations in e-health

The theme of ISOQOL’s 19th Annual Conference in Budapest, Hungary, was The Journey of Quality of Life Research: A Path Towards Personalized Medicine. Innovations in e-health was one of four plenary panels. E-health is changing the landscape of clinical practice and health care, but the best way to leverage the many promised benefits of emerging e-health technologies is still not clear. The Innovations in e-health panel presented emerging changes in technologies and applications that will facilitate clinical decision making, improve quality and efficiency of care, engage individuals in clinical decision making, and empower them to adopt healthy behaviors. The purpose of this paper was to present emerging trends in e-health and considerations for successful adoption of new technologies, and an overview of each of the presentations in the e-health plenary. The presentations included a personal perspective on the use of technology for self-monitoring in Parkinson’s disease, an overview of online social networks and emerging technologies, and the collection of patient-reported outcomes through web-based systems in clinical practice. The common thread across all the talks was the application of e-health tools to empower individuals with chronic disease to be actively engaged in the management of their health. Considerations regarding data ownership and privacy, universal access to e-health, interactivity between different types of e-health technologies, and tailoring applications to individual needs were explored

Using a smartphone-based self-management platform to support medication adherence and clinical consultation in Parkinson's disease.

The progressive nature of Parkinson's disease, its complex treatment regimens and the high rates of comorbid conditions make self-management and treatment adherence a challenge. Clinicians have limited face-to-face consultation time with Parkinson's disease patients, making it difficult to comprehensively address non-adherence. Here we share the results from a multi-centre (seven centres) randomised controlled trial conducted in England and Scotland to assess the impact of using a smartphone-based Parkinson's tracker app to promote patient self-management, enhance treatment adherence and quality of clinical consultation. Eligible Parkinson's disease patients were randomised using a 1:1 ratio according to a computer-generated random sequence, stratified by centre and using blocks of variable size, to intervention Parkinson's Tracker App or control (Treatment as Usual). Primary outcome was the self-reported score of adherence to treatment (Morisky medication adherence scale -8) at 16 weeks. Secondary outcomes were Quality of Life (Parkinson's disease questionnaire -39), quality of consultation for Parkinson's disease patients (Patient-centred questionnaire for Parkinson's disease), impact on non-motor symptoms (Non-motor symptoms questionnaire), depression and anxiety (Hospital anxiety and depression scale) and beliefs about medication (Beliefs about Medication Questionnaire) at 16 weeks. Primary and secondary endpoints were analysed using a generalised linear model with treatment as the fixed effect and baseline measurement as the covariate. 158 patients completed the study (Parkinson's tracker app = 68 and TAU = 90). At 16 weeks Parkinson's tracker app significantly improved adherence, compared to treatment as usual (mean difference: 0.39, 95%CI 0.04-0.74; p = 0.0304) with no confounding effects of gender, number of comorbidities and age. Among secondary outcomes, Parkinson's tracker app significantly improved patients' perception of quality of consultation (0.15, 95% CI 0.03 to 0.27; p = 0.0110). The change in non-motor symptoms was -0.82 (95% CI -1.75 to 0.10; p = 0.0822). 72% of participants in the Parkinson's tracker app group continued to use and engage with the application throughout the 16-week trial period. The Parkinson's tracker app can be an effective and novel way of enhancing self-reported medication adherence and quality of clinical consultation by supporting self-management in Parkinson's disease in patients owning smartphones. Further work is recommended to determine whether the benefits of the intervention are maintained beyond the 16 week study period

Finishing the euchromatic sequence of the human genome

The sequence of the human genome encodes the genetic instructions for human physiology, as well as rich information about human evolution. In 2001, the International Human Genome Sequencing Consortium reported a draft sequence of the euchromatic portion of the human genome. Since then, the international collaboration has worked to convert this draft into a genome sequence with high accuracy and nearly complete coverage. Here, we report the result of this finishing process. The current genome sequence (Build 35) contains 2.85 billion nucleotides interrupted by only 341 gaps. It covers ∼99% of the euchromatic genome and is accurate to an error rate of ∼1 event per 100,000 bases. Many of the remaining euchromatic gaps are associated with segmental duplications and will require focused work with new methods. The near-complete sequence, the first for a vertebrate, greatly improves the precision of biological analyses of the human genome including studies of gene number, birth and death. Notably, the human enome seems to encode only 20,000-25,000 protein-coding genes. The genome sequence reported here should serve as a firm foundation for biomedical research in the decades ahead

A Long Way to Go : Patient Perspectives on Digital Health for Parkinson's Disease

Digital health promises to improve healthcare, health, and wellness through the use of digital technologies. The purpose of this commentary is to review and discuss the field of digital health for Parkinson's disease (PD) focusing on the needs, expectations, and wishes of people with PD (PwP). Our analysis show that PwP want to use digital technologies to actively manage the full complexity of living with PD on an individual level, including the unpredictability and variability of the condition. Current digital health projects focusing on PD, however, does not live up to the expectations of PwP. We conclude that for digital health to reach its full potential, the right of PwP to access their own data needs to be recognised, PwP should routinely receive personalised feedback based on their data, and active involvement of PwP as an equal partner in digital health development needs to be the norm

Patient advocates respond to 'Utilizing Patient Advocates…' by Feeney et al

Correction in: Health Expectations, 2020, vol. 23, no. 4, page 976</p

Smartphone- and internet-assisted self-management and adherence tools to manage Parkinson's disease (SMART-PD):Study protocol for a randomised controlled trial (v7; 15 August 2014)

BACKGROUND: Nonadherence to treatment leads to suboptimal treatment outcomes and enormous costs to the economy. This is especially important in Parkinson’s disease (PD). The progressive nature of the degenerative process, the complex treatment regimens and the high rates of comorbid conditions make treatment adherence in PD a challenge. Clinicians have limited face-to-face consultation time with PD patients, making it difficult to comprehensively address non-adherence. The rapid growth of digital technologies provides an opportunity to improve adherence and the quality of decision-making during consultation. The aim of this randomised controlled trial (RCT) is to evaluate the impact of using a smartphone and web applications to promote patient self-management as a tool to increase treatment adherence and working with the data collected to enhance the quality of clinical consultation. METHODS/DESIGN: A 4-month multicentre RCT with 222 patients will be conducted to compare use of a smartphone- and internet-enabled Parkinson’s tracker smartphone app with treatment as usual for patients with PD and/or their carers. The study investigators will compare the two groups immediately after intervention. Seven centres across England (6) and Scotland (1) will be involved. The primary objective of this trial is to assess whether patients with PD who use the app show improved medication adherence compared to those receiving treatment as usual alone. The secondary objectives are to investigate whether patients who receive the app and those who receive treatment as usual differ in terms of quality of life, quality of clinical consultation, overall disease state and activities of daily living. We also aim to investigate the experience of those receiving the intervention by conducting qualitative interviews with a sample of participants and clinicians, which will be administered by independent researchers. TRIAL REGISTRATION: ISRCTN45824264 (registered 5 November 2013) ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/1745-6215-15-374) contains supplementary material, which is available to authorized users