Patient Innovation in Investigating the Effects of Environmental Pollution in Schizophrenia: Case Report of Digital Phenotyping Beyond Apps

Vaidyam, Aditya; Roux, Spencer; Torous, John

doi:10.2196/19778

Cited by 11 publications

(9 citation statements)

References 10 publications

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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).…”

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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“…The population of interest for this scoping review is people with long term mental health problems, as for them it is more important to learn to live with one’s symptoms and manage them, rather than aim for a cure. Some examples of user-led care in schizophrenia were known to the researchers, hence the decision to focus on severe mental illness was made [ 16 , 17 ]. To explore what processes are involved in the establishment of patient-provider partnerships in the recovery of patients with severe psychiatric disorders, three research questions were chosen.…”

Section: Methodsmentioning

confidence: 99%

The processes involved in the establishment of user-provider partnerships in severe psychiatric illnesses: a scoping review

Boerkoel

Brommels

2022

BMC Psychiatry

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Purpose With the rising relevance of person-centred care, initiatives towards user-led decision making and designing of care services have become more frequent. This designing of care services can be done in partnership, but it is unclear how. The aim of this scoping review was to identify for mental health services, what user-provider partnerships are, how they arise in practice and what can facilitate or hinder them. Methods A scoping review was conducted to obtain a broad overview of user provider partnerships in severe mental illness. Data was inductively analysed using a conventional content analysis approach, in which meaning was found in the texts. Results In total, 1559 titles were screened for the eligibility criteria and the resulting 22 papers found relevant were analysed using conventional content analysis. The identified papers had broad and differing concepts for user-provider partnerships. Papers considered shared decision making and user-involvement as partnerships. Mechanisms such as open communication, organisational top-down support and active participation supported partnerships, but professional identity, power imbalances and stress hindered them. Users can be impeded by their illness, but how to deal with these situations should be formalised through contracts. Conclusion The field of research around user-provider partnerships is scattered and lacks consensus on terminology. A power imbalance between a user and a provider is characteristic of partnerships in mental healthcare, which hinders the necessary relationship building allowing partnerships to arise. This power imbalance seems to be closely linked to professional identity, which was found to be difficult to change.

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Patient Innovation in Investigating the Effects of Environmental Pollution in Schizophrenia: Case Report of Digital Phenotyping Beyond Apps

Cited by 11 publications

References 10 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

The processes involved in the establishment of user-provider partnerships in severe psychiatric illnesses: a scoping review

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