The PatientsLikeMe<sup>®</sup>Multiple Sclerosis Community: Using online marketing to shift the health data privacy paradigm

Williams, David S.

doi:10.1179/cih.2010.3.1.48

Cited by 4 publications

(3 citation statements)

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“…Of the 96 publications included in the scoping review,11 13 publications (14%) contained no information that was relevant to the objectives of this study and were therefore excluded. Thus, our analysis included 83 publications, reporting on 21 patient-driven innovations 18–100. The publications that were excluded concerned the two innovations ( DIY-APS 101–107 and PatientsLikeMe 108–113) that accounted for most of the publications included (n=49, 59%).…”

Section: Resultsmentioning

confidence: 99%

Objectives and outcomes of patient-driven innovations published in peer-reviewed journals: a qualitative analysis of publications included in a scoping review

et al. 2023

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ObjectivesThe aim of this study was to gain a deeper understanding of the objectives and outcomes of patient-driven innovations that have been published in the scientific literature, focusing on (A) the unmet needs that patient-driven innovations address and (B) the outcomes for patients and healthcare that have been reported.MethodsWe performed an inductive qualitative content analysis of scientific publications that were included in a scoping review of patient-driven innovations, previously published by our research group. The review was limited to English language publications in peer-reviewed journals, published in the years 2008–2020.ResultsIn total, 83 publications covering 21 patient-driven innovations were included in the analysis. Most of the innovations were developed for use on an individual or community level without healthcare involvement. We created three categories of unmet needs that were addressed by these innovations: access to self-care support tools, open sharing of information and knowledge, and patient agency in self-care and healthcare decisions. Eighteen (22%) publications reported outcomes of patient-driven innovations. We created two categories of outcomes: impact on self-care, and impact on peer interaction and healthcare collaboration.ConclusionsThe patient-driven innovations illustrated a diversity of innovative approaches to facilitate patients’ and informal caregivers’ daily lives, interactions with peers and collaborations with healthcare. As our findings indicate, patients and informal caregivers are central stakeholders in driving healthcare development and research forward to meet the needs that matter to patients and informal caregivers. However, only few studies reported on outcomes of patient-driven innovations. To support wider implementation, more evaluation studies are needed, as well as research into regulatory approval processes, dissemination and governance of patient-driven innovations.

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Section: Resultsmentioning

confidence: 99%

Objectives and outcomes of patient-driven innovations published in peer-reviewed journals: a qualitative analysis of publications included in a scoping review

et al. 2023

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“…The 20 identified innovations addressed the unmet needs of patients and family caregivers with diabetes (7 innovations, 46 publications18–63); cancer (1 innovation, 1 publication64); rare diseases (3 innovations, 5 publications65–69); gastrointestinal diseases (2 innovations, 4 publications70–73); disabilities (2 innovations, 3 publications74–76); Parkinson’s disease (2 innovations, 3 publications77–79) and mental illness (1 innovation, 2 publications80 81). There were also innovations targeting unmet needs of multiple conditions (2 innovations, 32 publications82–113). Data by innovation are presented in table 3.…”

Section: Resultsmentioning

confidence: 99%

Patient-driven innovations reported in peer-reviewed journals: a scoping review

et al. 2022

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BackgroundAwareness of patients’ innovative capabilities is increasing, but there is limited knowledge regarding the extent and nature of patient-driven innovations in the peer-reviewed literature.ObjectivesThe objective of the review was to answer the question: what is the nature and extent of patient-driven innovations published in peer-reviewed scientific journals?Eligibility criteriaWe used a broad definition of innovation to allow for a comprehensive review of different types of innovations and a narrow definition of ‘patient driven’ to focus on the role of patients and/or family caregivers. The search was limited to years 2008–2020.Sources of evidenceFour electronic databases (Medline (Ovid), Web of Science Core Collection, PsycINFO (Ovid) and Cinahl (Ebsco)) were searched in December 2020 for publications describing patient-driven innovations and complemented with snowball strategies.Charting methodsData from the included articles were extracted and categorised inductively.ResultsA total of 96 articles on 20 patient-driven innovations were included. The number of publications increased over time, with 69% of the articles published between 2016 and 2020. Author affiliations were exclusively in high income countries with 56% of first authors in North America and 36% in European countries. Among the 20 innovations reported, ‘Do-It-Yourself Artificial Pancreas System‘ and the online health network ‘PatientsLikeMe’, were the subject of half of the articles.ConclusionsPeer-reviewed publications on patient-driven innovations are increasing and we see an important opportunity for researchers and clinicians to support patient innovators’ research while being mindful of taking over the work of the innovators themselves.

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“…Additional outlets specifically related to healthcare include patient and physician communities. 12 The role of social media in the healthcare arena Social media has taken communication in the healthcare field from passive to active as more patients make use of these sites to seek health information, research providers, and connect with other patients and HCP. 13,14 In the past, communication in the healthcare field was unidirectional and disseminated from a person of authority to the masses versus the two-way communication it is today.…”

Section: Literature Reviewmentioning

confidence: 99%

Digital house calls: US healthcare professionals and online media communication

Craig

Campbell

Bichard

et al. 2013

Journal of Communication in Healthcare

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The popularity and increased use of online interaction and social media websites is certain to impact the healthcare profession. As 80% of Americans with Internet access search for health information, it is important for healthcare professionals (HCP) to adapt to the needs of their clients. Through the use of an online survey of HCP, this study offers insight into their current interest and use of online media. The findings indicate that many HCP have little interest in participating in online interaction with patients and are deterred by issues of privacy and liability. Applying a theoretical framework of uses and gratifications, our study addresses HCP motivations for interacting online, both professionally and personally. Analysis reveals that HCPs have three dominant motivations for using online social media: professional selfexpression, social entertainment, and convenience. Relationships are noted between motivations for use and frequency of social media activity. Findings inform best practices in communication via online platforms for HCP as they forge relationships with patients in a digital age.

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The PatientsLikeMe^®Multiple Sclerosis Community: Using online marketing to shift the health data privacy paradigm

Cited by 4 publications

References 0 publications

Objectives and outcomes of patient-driven innovations published in peer-reviewed journals: a qualitative analysis of publications included in a scoping review

Objectives and outcomes of patient-driven innovations published in peer-reviewed journals: a qualitative analysis of publications included in a scoping review

Patient-driven innovations reported in peer-reviewed journals: a scoping review

Digital house calls: US healthcare professionals and online media communication

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The PatientsLikeMe®Multiple Sclerosis Community: Using online marketing to shift the health data privacy paradigm

Cited by 4 publications

References 0 publications

Objectives and outcomes of patient-driven innovations published in peer-reviewed journals: a qualitative analysis of publications included in a scoping review

Objectives and outcomes of patient-driven innovations published in peer-reviewed journals: a qualitative analysis of publications included in a scoping review

Patient-driven innovations reported in peer-reviewed journals: a scoping review

Digital house calls: US healthcare professionals and online media communication

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Product

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The PatientsLikeMe^®Multiple Sclerosis Community: Using online marketing to shift the health data privacy paradigm