[HTML][HTML] Patients as research partners; how to value their perceptions, contribution and labor?

E Smith, JC Bélisle-Pipon, D Resnik - Citizen science: theory and …, 2019 - ncbi.nlm.nih.gov
Citizen Science refers to the consultation, participation, engagement or involvement of the
general public in research. Rationales for this interaction include increased public access …

Building a culture of engagement at a research centre for childhood disability

K Pozniak, F Buchanan, A Cross, J Crowson… - Research involvement …, 2021 - Springer
Background Engaging patients and family members as partners in research studies has
become a widespread practice in healthcare. However, relatively little has been …

Patient Science: Citizen Science involving chronically ill people as co-researchers

NB Heyen, J Gardecki, D Eidt-Koch… - Journal of …, 2022 - jprm.scholasticahq.com
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 …

Future directions for patient engagement in research: a participatory workshop with Canadian patient partners and academic researchers

AM Chudyk, R Stoddard, TA Duhamel… - Health Research Policy …, 2024 - Springer
Background Patient engagement in research (also commonly referred to as patient or
patient and public involvement in research) strives to transform health research wherein …

Participatory action research to pilot a model of mental health service user involvement in an Ethiopian rural primary healthcare setting: study protocol

S Abayneh, H Lempp, C Hanlon - Research involvement and engagement, 2020 - Springer
Background Involvement of service-users at all levels of the mental health system is a policy
imperative in many countries internationally. However, putting policy into practice seems …

A patient perspective on applying intermittent fasting in gynecologic cancer

A Redding, S Santarossa, D Murphy, MP Udumula… - BMC Research …, 2023 - Springer
Objective Researchers sought patient feedback on a proposed randomized controlled trial
(RCT) in which gynecological cancer patients would modify their diets with intermittent …

[HTML][HTML] Citizen Science for Health: An international survey on its characteristics and enabling factors

G Remmers, BG Tzovaras… - Citizen …, 2024 - theoryandpractice …
Even though citizen and patient engagement in health research has a long tradition, citizen
science in health has only recently gained attention and recognition. However, at present …

Equality and equity in compensating patient engagement in research: a plea for exceptionalism

JC Bélisle-Pipon, V Couture, MC Roy - Research Ethics, 2022 - journals.sagepub.com
Engaging citizens and patients in research has become a truism in many fields of health
research. It is now seen as a laudable—if not compulsory—activity in research for yielding …

Move the north: evaluation of a regional stakeholder engagement initiative to support the development of a community-partnered physical activity research agenda

C Pelletier, A Pousette, G Fox, R Keahey… - Research Involvement …, 2019 - Springer
Background Although it is generally accepted that engaging with members of the public
contributes to more actionable and relevant research, there are a limited number of reported …

[PDF][PDF] " A problem shared..." The challenges of public inolvement for researchers in Denmark and the UK

K Staley, M Sandvei, M Hørder - 2019 - portal.findresearcher.sdu.dk
We are grateful to all the researchers, managers, patients and members of the public who
shared their experiences for this mapping project in Denmark, and in numerous evaluations …