Evidence map›Paper›PMID 30946019›Full record

ArticleJournal of medical Internet research2021

Googling for Neurological Disorders: From Seeking Health-Related Information to Patient Empowerment, Advocacy, and Open, Public Self-Disclosure in the Neurology 2.0 Era.

Mariano Martini, Nicola Luigi Bragazzi

Abstract read
In one paragraph

Article in Journal of medical Internet research, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

6 citing papers in PubMed.

  1. Article
  2. Article
  3. Patients' Perspective in Hereditary Ataxia.Cerebellum (London, England) · 2024
    Article
  4. Analysis of Answers to Queries among Anonymous Users with Gastroenterological Problems on an Internet Forum.International journal of environmental research and public health · 2020
    Article
  5. Article
  6. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

2 authors.

Mariano MartiniDepartment of Health Sciences, School of Public Health, University of Genoa, Genoa, Italy.ORCID 0000-0001-5703-0858
Nicola Luigi BragazziDepartment of Health Sciences, School of Public Health, University of Genoa, Genoa, Italy.ORCID 0000-0001-8409-868X

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Since its introduction, the internet has played a major role in reshaping patient-physician communication and interactions, having fostered a shift from a paternalistic to a patient-centered model. Because of its dynamic nature, the internet has been used as a platform to not only disseminate knowledge-favored by improved access to an increasing wealth of available resources-but also to spread advocacy and awareness, contribute to fund-raising, and facilitate open, public self-disclosure of one's own disease, thus eliminating any taboo and reducing the stigma associated with it. The era of Medicine 2.0 is characterized by openness, collaboration, participation, and social networking. The current situation is completely different from the time when Lorenzo Odone's parents, after his diagnosis of adrenoleukodystrophy, decided to attend medical school in order to collect information about a devastating, unknown disease and had to contend with medical authorities at that establishment to convince them of the alleged effectiveness and safety of their discovered therapeutics. Orphan and rare neurological diseases have currently received recognition on web-based resources. However, while the intention is not to ridicule Odone's family legacy and the "complicated lessons" they have reported, some issues should be carefully addressed by health authorities, such as the reputability, reliability, and accuracy of material available on the internet and prevention of the dissemination of material that could instill illusions and unjustified hopes in individuals seeking medical treatment. Neurologists should be aware of such digital resources, participate in web-based activities, and recommend select high-quality websites to their patients.

Indexed as

Nervous System DiseasesNeurologyDisclosureHumansInternetPatient ParticipationReproducibility of Resultsadvocacyhealth information seekingneurological disordersopen self-disclosure

Identifiers

PMID30946019
PMCPMC8088864

What OpenQuestion holds

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LicenceCC BY
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Registered trials

None linked

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.