ArticleBMC medicine2018
Patient, study thyself.
Article in BMC medicine, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
15 citing papers in PubMed, 1 synthesis or guideline pooled it, 22 citations in OpenAlex.
- Efficacy, safety, and user experience of DIY or open-source artificial pancreas systems: a systematic review.Acta diabetologica · 2021Pooled it
- Article
- Patient- and Public-Led Research - How Is It Defined and Practiced: A Scoping Review.Journal of patient experience · 2026Article
- Inclusion in neurological research: empowering people living with neurological diseases.Nature reviews. Neurology · 2025Review
- Participant Contributions to Person-Generated Health Data Research Using Mobile Devices: Scoping Review.Journal of medical Internet research · 2025Article
- Co-designing a wiki-based community knowledge management system for personal science.Royal Society open science · 2024Article
- Article
- Entrepreneurial treatment activism for undone science: mannitol and Parkinson's disease.BioSocieties · 2023Article
- Article
- Toward a digital citizen lab for capturing data about alternative ways of self-managing chronic pain: An attitudinal user study.Frontiers in rehabilitation sciences · 2022Article
- Patient-Led Research Collaborative: embedding patients in the Long COVID narrative.Pain reports · 2021Review
- Play the Pain: A Digital Strategy for Play-Oriented Research and Action.Frontiers in psychiatry · 2021Article
- The Do-It-Yourself Artificial Pancreas: A Comprehensive Review.Diabetes therapy : research, treatment and education of diabetes and related disorders · 2020Review
- Virtual Care 2.0-a Vision for the Future of Data-Driven Technology-Enabled Healthcare.Current treatment options in cardiovascular medicine · 2019Review
- Ethical Aspects of Personal Science for Persons with Parkinson's Disease: What Happens When Self-Tracking Goes from Selfcare to Publication?Journal of Parkinson's diseaseArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The past 15 years have seen the emergence of a new paradigm in medical research, namely of people living with medical conditions (whether patients, parents, or caregivers) using digital tools to conduct N-of-1 trials and scientifically grounded research on themselves, whilst using the Internet to form communities of like-minded individuals willing to self-experiment. Prominent examples can be found in amyotrophic lateral sclerosis/motor neurone disease (the 'lithium study' on PatientsLikeMe), Parkinson's disease ('digital patient' Sara Riggare), and diabetes (the 'open artificial pancreas' of the #WeAreNotWaiting movement). Through transparency, data sharing, open source code, and publication in the peer-reviewed scientific literature, such activities conform to expected scientific conventions. However, other conventions, such as ethical oversight, regulation, professionalization, and the ability to translate this new form of relatively biased data into generalizable decisions, remain challenged. While critics worry such participant-led research merely muddies the waters of high-quality medical research and exposes patients to new harms, the potential is there to enroll millions of active minds in unravelling the wicked problems of complex medical disorders that degrade the human health span.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.