Lived experience experts: a name created by us for us

Vázquez, Esmeralda; Kim, Michelle; Santaella, Maria E

doi:10.1080/17474086.2023.2178410

Cited by 17 publications

(4 citation statements)

References 15 publications

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“…Rare disease caregivers are lived experience experts with intimate knowledge about disease presentation and often must gather and disseminate information to clinicians and researchers. 23 Patients and caregivers are the experts providing the focus and impetus for the ensuing research. They are passionate advocates for their loved ones and the disease.…”

Section: Resultsmentioning

confidence: 99%

The growing research toolbox for SLC13A5 citrate transporter disorder: a rare disease with animal models, cell lines, an ongoing Natural History Study and an engaged patient advocacy organization

Brown,

Bainbridge,

Zahn

et al. 2024

Therapeutic Advances in Rare Disease

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TESS Research Foundation (TESS) is a patient-led nonprofit organization seeking to understand the basic biology and clinical impact of pathogenic variants in the SLC13A5 gene. TESS aims to improve the fundamental understanding of citrate’s role in the brain, and ultimately identify treatments and cures for the associated disease. TESS identifies, organizes, and develops collaboration between researchers, patients, clinicians, and the pharmaceutical industry to improve the lives of those suffering from SLC13A5 citrate transport disorder. TESS and its partners have developed multiple molecular tools, cellular and animal models, and taken the first steps toward drug discovery and development for this disease. However, much remains to be done to improve our understanding of the disorder associated with SLC13A5 variants and identify effective treatments for this devastating disease. Here, we describe the available SLC13A5 resources from the community of experts, to foundational tools, to in vivo and in vitro tools, and discuss unanswered research questions needed to move closer to a cure.

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Section: Resultsmentioning

confidence: 99%

The growing research toolbox for SLC13A5 citrate transporter disorder: a rare disease with animal models, cell lines, an ongoing Natural History Study and an engaged patient advocacy organization

Brown,

Bainbridge,

Zahn

et al. 2024

Therapeutic Advances in Rare Disease

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show abstract

“…However, not all citizens are individuals with lived experience. In this context, we align with the approach common in healthcare research and practice (e.g., Vázquez et al 2023), including only those who truly have lived experience of a specific policy area. For instance, in disability policy, this would encompass disabled individuals and their families or carers, but not practitioners with professional experience in disability.…”

Section: Defining Termsmentioning

confidence: 99%

Lived experience evidence in disability policy making

Williams

2024

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Cardiff University was founded in 1883. Located in a thriving capital city, Cardiff is an ambitious and innovative university, which is intent on building strong international relationships while demonstrating its commitment to Wales. Economic and Social ResearchCouncil (ESRC) is part of UK Research and Innovation, a new organisation that brings together the UK's seven research councils, Innovate UK and Research England to maximise the contribution of each council and create the best environment for research and innovation to flourish. Welsh Government is the devolved government of Wales, responsible for key areas of public life, including health, education, local government, and the environment.

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“…In support of this, Enzler et al, (2021) highlighted that the 'true' understanding of misophonia from a lived experience standpoint is largely unexplored to date by the literature, further implicating that without examining the subjective experiences of individuals (on a larger scale), this will in turn hinder the progression of psychiatric tools, treatments, causal research, and overall understanding of misophonia. Furthermore, Vázquez et al, (2023) stressed the importance of including lived experience at all stages of research development, as they argue that patients can offer 'specialist expertise' about their disorder, that most researchers cannot, due to them living with their disorders daily. This prominently relates to the movement of patient and public involvement (PPI) in the design and conduct of health research, as PPI has been demonstrated to increase the value, integrity, and overall quality of literature (Biggane et al, 2019).…”

Section: Introductionmentioning

confidence: 99%

“…deafness, and mimicking behaviours. Coinciding withVázquez et al, (2023) who suggested that incorporating lived experience into research allows for academics to be presented with service-user 'specialist expertise', consequently highlighting areas of interest that may not have previously been highlighted due to researchers largely lacking these 'specialist expertise'. In relation to the usefulness of online support networks, this demonstrates that as well as online support networks, such as Reddit, being useful for providing users with support, researchers could also potentially utilise these online support networks to generate new research questions etc.…”

mentioning

confidence: 99%

“I’m sure Dr Jekyll had misophonia”: A Reflexive Thematic Analysis (RTA) examining lived experience patterns in misophonia and the usefulness of Reddit as an online support network.

Ash,

Collum,

Owens

2023

Preprint

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Misophonia, commonly referred to as the ‘hatred of sounds’ disorder (despite lack of official classification in the diagnostic tools), has largely been investigated with the purpose of establishing a mechanism responsible for the disorder. Perpetuating the emergence of two main gaps within the literature; i) lack of large-scale lived experience research, and ii) lack of investigation towards the online support networks that are becoming increasingly utilised and available to misophonic individuals. To address these gaps, this project utilised the r/misophonia subreddit as a data collection source to examine the presence of lived experience patterns in people with misophonia, and to assess the usefulness of online support networks. The dataset included 26 reddit posts (10 from the year 2021, and 16 from the year 2022) which were randomly sampled using an application programming interface (API), and then analysed qualitatively using reflexive thematic analysis (RTA). Overall, the findings portrayed that misophonic individuals share a plethora of lived experiences, and regarding the use of online support networks, such as the r/misophonia subreddit, these were represented as largely positive environments (via. Providing support, freedom of expression, and a place to vent). However, there were also negative implications of using online social networks, for example they can become environments of perpetuating negativity where discussions of self-harm, and suicide may take place.

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Lived experience experts: a name created by us for us

Cited by 17 publications

References 15 publications

The growing research toolbox for SLC13A5 citrate transporter disorder: a rare disease with animal models, cell lines, an ongoing Natural History Study and an engaged patient advocacy organization

The growing research toolbox for SLC13A5 citrate transporter disorder: a rare disease with animal models, cell lines, an ongoing Natural History Study and an engaged patient advocacy organization

Lived experience evidence in disability policy making

“I’m sure Dr Jekyll had misophonia”: A Reflexive Thematic Analysis (RTA) examining lived experience patterns in misophonia and the usefulness of Reddit as an online support network.

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