A5047548456- Amyotrophic Lateral Sclerosis Research
- Digital Mental Health Interventions
- Neurogenetic and Muscular Disorders Research
- Ethics in Clinical Research
- Health Systems, Economic Evaluations, Quality of Life
- Mental Health and Patient Involvement
- Mobile Health and mHealth Applications
- Social Media in Health Education
- Multiple Sclerosis Research Studies
- Health Literacy and Information Accessibility
- Telemedicine and Telehealth Implementation
- Epilepsy research and treatment
- Parkinson's Disease Mechanisms and Treatments
- Emergency and Acute Care Studies
- Artificial Intelligence in Healthcare and Education
- Neurological disorders and treatments
- Patient-Provider Communication in Healthcare
- Genetic Neurodegenerative Diseases
- Mental Health Research Topics
- Prion Diseases and Protein Misfolding
- Health Policy Implementation Science
- Pharmacological Effects and Toxicity Studies
- Medication Adherence and Compliance
- Healthcare cost, quality, practices
- Mental Health Treatment and Access
Advanced Innovative Engineering (United Kingdom)
2023-2025
NHS Digital
2020-2024
Digital Health Cooperative Research Centre
2022-2024
Wolters Kluwer Health
2020-2023
Office of Legacy Management
2023
Independent Sector
2022
Oldham Council
2022
PatientsLikeMe (United States)
2010-2019
University of Pittsburgh
2018-2019
Barts Health NHS Trust
2017
Background: PatientsLikeMe is an online quantitative personal research platform for patients with life-changing illnesses to share their experience using patient-reported outcomes, find other like them matched on demographic and clinical characteristics, learn from the aggregated data reports of others improve outcomes. The goal website help answer question: "Given my status, what best outcome I can hope achieve, how do get there?" Objective: Using a cross-sectional survey, we sought...
Treatment burden refers to the workload imposed by healthcare on patients, and effect this has quality of life. The Burden Questionnaire (TBQ) aims assess treatment in different condition contexts. Here, we aimed evaluate validity reliability an English version TBQ, a scale that was originally developed French. TBQ translated into forward-backward translation method. Wording possible missing items were assessed during pretest involving 200 patients with chronic conditions. Measurement...
To determine whether providing remote neurologic care into the homes of people with Parkinson disease (PD) is feasible, beneficial, and valuable.
Objectives To compare breadth of condition coverage, accuracy suggested conditions and appropriateness urgency advice eight popular symptom assessment apps. Design Vignettes study. Setting 200 primary care vignettes. Intervention/comparator For apps seven general practitioners (GPs): coverage condition-suggestion measured against the vignettes’ gold-standard. Primary outcome measures (1) Proportion ‘covered’ by an app, that is, not excluded because user was too young/old or pregnant,...
Background There are far more patients in mental distress than there is time available for health professionals to support them. Although digital tools may help mitigate this issue, critics have suggested that technological solutions lack human empathy will prevent a bond or therapeutic alliance from being formed, thereby narrowing these solutions’ efficacy. Objective We aimed investigate whether users of cognitive behavioral therapy (CBT)–based conversational agent would report levels...
Background: Evaluating a new use for an existing drug can be expensive and time consuming. Providers patients must all too often rely upon their own individual-level experience to inform clinical practice, which generates only anecdotal unstructured data. While academic-led trials are occasionally conducted test off-label uses of drugs with expired patents, this is relatively rare. In work, we explored how patient-centered online research platform could supplement traditional create richer...
Focality of onset amyotrophic lateral sclerosis (ALS) is not understood. Attempts to implicate physical exercise in the aetiology ALS have provided inconsistent results. If use a limb were important defining site onset, then handedness might be expected influence side upper limb-onset disease and footedness likewise lower ALS.ALS patients registered with an internet-based support invited complete online questionnaire concerning symptoms their dominant hand foot. A binomial test proportions...
The theme of ISOQOL's 19th Annual Conference in Budapest, Hungary, was Journey Quality Life Research: A Path Towards Personalized Medicine. Innovations e-health one four plenary panels. E-health is changing the landscape clinical practice and health care, but best way to leverage many promised benefits emerging technologies still not clear. panel presented changes applications that will facilitate decision making, improve quality efficiency engage individuals empower them adopt healthy...
An epilepsy community was developed on PatientsLikeMe.com to share data between patients improve their outcomes by finding other like them. In a 14-day response period, 221 with (mean age: 40 years, SD: 12, range: 17-72, 66% female) completed survey about benefits they perceived. Prior using the site, third of respondents (30%) did not know anyone else whom could talk; these, 63% now had at least one patient connect. Perceived included: another experiencing same symptoms (59%), gaining...
When someone needs to know whether and when seek medical attention, there are a range of options consider. Each will have consequences for the individual (primarily considering trust, convenience, usefulness, opportunity costs) wider health system (affecting clinical throughput, cost, efficiency). Digital symptom assessment technologies that leverage artificial intelligence may help patients navigate right type care with correct degree urgency. However, recent review highlighted gap in...
BackgroundTo ensure the creation of treatments that maximize value at lowest cost, all aspects health care system need to align with patient needs and preferences. Despite growing efforts engage patients in research regulatory activities, pharmaceutical industry has yet involvement drug development process.ObjectiveTo gain a better understanding present state development.MethodsThrough semistructured interview methodology, we sought identify opportunities, barriers, examples process....
In recent years, there have been prominent calls for a new social contract that accords more central role to citizens in health research. Typically, this has understood as and patients having greater voice within the standard research enterprise. Beyond this, however, it is important renegotiated specifically addresses oversight of new, path-breaking approach research: participant-led light momentum behind its potential advance knowledge by challenging complementing traditional research,...
<h3>Objective:</h3> To determine the frequency of amyotrophic lateral sclerosis (ALS) plateaus and reversals in Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT) database. <h3>Methods:</h3> We analyzed Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS) ALSFRS–revised (ALSFRS-R) data from PRO-ACT participants. The frequencies participants experiencing (periods where scores did not change) were calculated over 6-, 12-, 18-month epochs. percentage ever improved) different...
There is an impression both in clinical practice and research literature that patients with amyotrophic lateral sclerosis (ALS) possess 'heroic stoicism a low frequency of depression'. Reliance on specific interview methods may have contributed to differing estimates mood disorder people ALS. The objective the current study was compare prevalence rates depression anxiety ALS using different assessment tools. Beck Depression Inventory (BDI), Hospital Anxiety Scale (HADS) Spielberger...
Self-assessment of symptom progression in chronic diseases is increasing importance clinical research, patient management and specialized outpatient care. Against this background, we developed a secure internet platform (ALShome.de) that allows online assessment the revised ALS Functional Rating Scale (ALSFRS-R) other established self-assessment questionnaires. We closed portal to assess reported outcomes. In prospective, controlled stratified study, patients conducted web-based ALSFRS-R...