Citizen Health Science

Walls, Theodore A.; Coria, Abbigayle

doi:10.23889/ijpds.v4i1.1074

Cited by 5 publications

(3 citation statements)

References 41 publications

(67 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…From a multidisciplinary citizen science perspective, the health field might look like a somewhat ordinary research field if the focus is on crowdsourcing or other formats where laypersons have a supplying role in data collection (Borda et al, 2020;Hood & Auffray, 2013;Walls et al, 2019). Here, citizen scientists might, for instance, use digital devices to record and report when they experience an allergic reaction and where they are at that moment.…”

Section: Introductionmentioning

confidence: 99%

Patient Science: Citizen Science Involving Chronically Ill People as Co-Researchers

Heyen

Gardecki

Eidt-Koch

et al. 2022

Journal of Participatory Research Methods

View full text Add to dashboard Cite

Citizen science projects in health-related research usually follow a crowdsourcing approach where laypersons primarily have a supplying role in data collection. By contrast, this article presents an approach on a much higher engagement level (co-creation) where a team of professional and citizen scientists jointly plans, implements, and evaluates a scientific study on a chronic disease from which the citizen (patient) scientists themselves suffer. We call this approach patient science; it systematically makes use of the patients’ expertise of living with the disease. This article describes the pilot project and conceptual differences compared to other participatory approaches in medical and health research. It elaborates on the implications of involving chronically ill people as co-researchers and, finally, reflects on the benefits and challenges of patient science.

show abstract

Section: Introductionmentioning

confidence: 99%

Patient Science: Citizen Science Involving Chronically Ill People as Co-Researchers

Heyen

Gardecki

Eidt-Koch

et al. 2022

Journal of Participatory Research Methods

View full text Add to dashboard Cite

show abstract

“…Citizen science can be viewed as participatory action research that aims to democratize ( 25 ) and personalize healthcare research ( 26 , 27 ). This requires participants to contribute knowledge from their lived experiences and contextual actions ( 28 , 29 ).…”

Section: Introductionmentioning

confidence: 99%

Toward a digital citizen lab for capturing data about alternative ways of self-managing chronic pain: An attitudinal user study

Khalili-Mahani¹,

Woods²,

Holowka³

et al. 2022

Front. Rehabilit. Sci.

View full text Add to dashboard Cite

BackgroundMyriad psychosocial and cultural factors influence personal ways of coping with chronic pain (CP). Mobile health (mHealth) apps facilitate creation of citizen laboratories outside clinical frameworks. However, issues of safety, privacy and technostress must be addressed. This attitudinal user study aimed to assess whether persons with persistent pain (PwPP) would be open to sharing qualitative and quantitative data about their self-management of CP via mHealth platforms.MethodsIn March 2020, we invited PwPPs, their personal or medical caregivers, or those interested in the development of an app for researching alternative ways of self-managing CP to complete an anonymous survey. We formulated an attitudinal survey within the theoretical framework of stress to estimate whether the novelty, unpredictability, and risks of data-sharing via mHealth apps concerned users. Descriptive statistics (% Part/Group) were used to interpret the survey, and open comments were reflectively analyzed to identify emerging themes.ResultsOf 202 responses (June 2021), 127 identified as PwPPs (average age 43.86 ± 14.97; 100/127 female), and listed several primary and secondary CP diagnoses. In almost 90% of PwPPs, physical and emotional wellbeing were affected by CP. More than 90% of PwPPs used alternative therapies (acupuncture, homeopathy, massage therapy, etc.). Attitude toward mHealth apps were positive even though nearly half of PwPPs were unfamiliar with them. More than 72% of respondents were open to using a health-related app as a research tool for data collection in real life situations. Comprehensive data collection (especially about psychosocial factors) was the most important requirement. More respondents (especially medical professionals) were concerned about health hazards of misinformation communicated via health-related information and communication systems (maximum 80%) than about privacy (maximum 40%). Qualitative analyses revealed several promises and impediments to creation of data-sharing platforms for CP.ConclusionsThis study shows a general willingness among PwPPs to become partners in studying alternative pain management. Despite a generally positive attitude toward the concept of sharing complex personal data to advance research, heterogeneity of attitudes shaped by personal experiences must be considered. Our study underlines the need for any digital strategy for CP research to be person-centered and flexible.

show abstract

“…5 , 6 The two practices along with a variety of other advances in personal digital health have enabled a new and viable approach to health inquiry. 7 People with PD are using personal digital health tools to self-track and self-experiment on their conditions to aid in effectively self-managing and mitigating symptoms of PD. The cases covered herein highlight some of the potential applications, benefits and challenges of personal digital health in PD.…”

mentioning

confidence: 99%

Personal digital health in Parkinson's disease: Case histories and commentary

et al. 2021

View full text Add to dashboard Cite

The use of self-tracking of bio-behavioral states along with prescription dosing information is increasingly popular in the care and study of many human diseases. Parkinson’s Disease is particularly amenable to such tracking, as patients live with the progressive disease for many years, increasing motivation to pursue quality of life changes through careful monitoring of symptoms and self-guided management of their medications and lifestyle choices. Through the use of digital self-tracking technologies, patients independently or in conjunction with professional medical advice are modulating their medications and behavioral regimens based on self-tracking data. Self-trackers engage in self-experimentation with their health, and more broadly, in personal digital health. This paper briefly depicts notable, recent patient accounts of self-tracking and the uses of digital health in Parkinson’s disease: those of Sara Riggare and Kevin Krejci. It also highlights important facets of a previously unreported case: Velva Walden’s care as managed jointly by her caregiver son. Key aspects of self-tracking inherent to these cases are examined and potential opportunities to advance personalized medicine through the use of digital health and self-experimentation are outlined.

show abstract

Citizen Health Science

Cited by 5 publications

References 41 publications

Patient Science: Citizen Science Involving Chronically Ill People as Co-Researchers

Patient Science: Citizen Science Involving Chronically Ill People as Co-Researchers

Toward a digital citizen lab for capturing data about alternative ways of self-managing chronic pain: An attitudinal user study

Personal digital health in Parkinson's disease: Case histories and commentary

Contact Info

Product

Resources

About