The silver linings of Parkinson's disease.

Parkinson’s disease (PD) is a neurodegenerative condition, characterized by motor, non-motor disability, and a reduced quality of life. Stimulated by a question raised by a person with PD, we posted an orienting survey on social media, asking whether there is possibly any “silver lining” (an upside) to having PD. Most respondents identified one or more positive changes, mainly a new focus in life, better coping skills, new activities, healthier lifestyle, and improved relationships with relatives and friends.

Bringing Advanced Therapies for Parkinson's Disease to the Clinic: The Patient's Perspective.

There is an urgent unmet need in the Parkinson's disease community-advanced therapies to modify the inevitable decline that occurs in those affected by this progressive neurodegenerative disease for which there is no cure. This will require collaboration from all stakeholders and central to those partnerships are patients themselves. But participation in clinical trials and clinical use of advanced therapies have their own risk profile above and beyond standard therapeutics as evidenced by past invasive procedures.

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 shows 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.

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

[This corrects the article DOI: 10.1038/s41531-016-0003-z.].

Attitudes Towards Data Collection, Ownership and Sharing Among Patients with Parkinson's Disease.

Background: The ownership and sharing of patient medical data is an increasingly contentious subject in medicine generally but also within the field of Parkinson's disease (PD). Despite being the providers of the medical data, patients are rarely consulted as to its usage.

Objective: The objective of this paper is to establish patient attitudes to ownership of their own medical data and the sharing thereof.

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.

Challenges of Improving Patient-Centred Care in Parkinson's Disease.

Background: Parkinson's disease is a neurodegenerative condition with a complex pattern of motor and non-motor symptoms. Of several clinical scales used to measure patient experience few are delivered by patients themselves.

Objective: The present study reports the results of an online survey to establish (a) factors that most influence QoL (quality of life) for people with Parkinson's and (b) areas where self-monitoring may help.

Exploring Issues Around Wearing-off and Quality of Life: The OFF-PARK Survey of People with Parkinson's Disease and their Care Partners.

Background: The negative impact of wearing-off on the quality of life (QoL) of people with Parkinson's (PWPs) is well established. However, most studies have been performed from the clinician's perspective, and the needs of PwPs and care partners have been considered separately.

Objective: This survey aimed to better understand the impact of wearing-off on both patient and care partner lives and to assess how often they are asked about their QoL in their specialist consultations.

Rising to the Challenges of Clinical Trial Improvement in Parkinson's Disease.

Background: Despite an urgent need for new medications, clinical trials in Parkinson's have a relatively low rate of success. Although many reasons have been proposed for this, the opinions of patients and scientists, the two principal stakeholders, have not been widely canvassed.

Objective: The objective of the present study was to establish the main barriers to clinical trials success in Parkinson's, as perceived by people with Parkinson's and those engaged in conducting clinical trials in Parkinson's.

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.

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.