TY - JOUR
T1 - An auto-ethnographic study of co-produced health research in a patient organisation
T2 - unpacking the good, the bad, and the unspoken
AU - Janssens, Astrid
AU - Drachmann, Danielle
AU - Barnes-Cullen, Kristy
AU - Carrigg, Austin
AU - Christesen, Henrik Thybo
AU - Futers, Becky
AU - Lavery, Yvette Ollada
AU - Palms, Tiffany
AU - Petersen, Jacob Sten
AU - Shah, Pratik
AU - Thornton, Paul
AU - Wolfsdorf, Joseph
N1 - Publisher Copyright:
© The Author(s) 2024.
PY - 2024/7/23
Y1 - 2024/7/23
N2 - BACKGROUND: In rare diseases, limited access to services and rare disease experts may force families to act as medical advocates for their child; they can volunteer to support clinician-initiated research or initiate and lead research themselves. Ketotic Hypoglycemia International (KHI) is a new, global organization for families affected by idiopathic ketotic hypoglycemia (IKH) and is run solely by volunteers. Doing research together, families and international experts in a collaborative process such as at KHI, also referred to as patient and public involvement and engagement (PPIE) or extreme citizen science, is often praised for its positive effects on the research and the stakeholders involved.METHODS: We used auto-ethnographic narratives from parents and medical professionals in KHI to report on their experiences with co-produced health research. All co-authors wrote down their experiences in relation to three topics: time invested, work invested and power dynamics.RESULTS: Whilst the parents and health care professionals felt a new hope for (their) children with IKH, they also felt pressure to contribute time or to be flexible in how and when they dedicated time towards the organization. The power dynamics were characterised by a change in the relationship between the parents and medical experts; the parent being taught by the expert shifted to the expert learning from the lived experience of the parent. Both parents and medical experts struggled with maintaining boundaries and safeguarding their mental health.CONCLUSION: Our findings call for the need to secure and prioritize funding for patient organizations, to enable them to create the sustainable architecture required for meaningful PPIE within these organizations. The morals and often deeply personal reasons for engaging with voluntary work in health research, can lead to overstepping of boundaries. As a result of our research, we call for the development of ethics of care guidelines within collaborative health research.
AB - BACKGROUND: In rare diseases, limited access to services and rare disease experts may force families to act as medical advocates for their child; they can volunteer to support clinician-initiated research or initiate and lead research themselves. Ketotic Hypoglycemia International (KHI) is a new, global organization for families affected by idiopathic ketotic hypoglycemia (IKH) and is run solely by volunteers. Doing research together, families and international experts in a collaborative process such as at KHI, also referred to as patient and public involvement and engagement (PPIE) or extreme citizen science, is often praised for its positive effects on the research and the stakeholders involved.METHODS: We used auto-ethnographic narratives from parents and medical professionals in KHI to report on their experiences with co-produced health research. All co-authors wrote down their experiences in relation to three topics: time invested, work invested and power dynamics.RESULTS: Whilst the parents and health care professionals felt a new hope for (their) children with IKH, they also felt pressure to contribute time or to be flexible in how and when they dedicated time towards the organization. The power dynamics were characterised by a change in the relationship between the parents and medical experts; the parent being taught by the expert shifted to the expert learning from the lived experience of the parent. Both parents and medical experts struggled with maintaining boundaries and safeguarding their mental health.CONCLUSION: Our findings call for the need to secure and prioritize funding for patient organizations, to enable them to create the sustainable architecture required for meaningful PPIE within these organizations. The morals and often deeply personal reasons for engaging with voluntary work in health research, can lead to overstepping of boundaries. As a result of our research, we call for the development of ethics of care guidelines within collaborative health research.
KW - Auto-ethnography
KW - Citizen science
KW - Patient and public involvement and engagement
KW - Patient organisation
KW - Rare disease
UR - http://www.scopus.com/inward/record.url?scp=85199370944&partnerID=8YFLogxK
U2 - 10.1186/s40900-024-00609-8
DO - 10.1186/s40900-024-00609-8
M3 - Article
C2 - 39044294
SN - 2056-7529
VL - 10
JO - Research involvement and engagement
JF - Research involvement and engagement
IS - 1
M1 - 76
ER -