What Online User Innovation Communities Can Teach Us about Capturing the Experiences of Patients Living with Chronic Health Conditions. A Scoping Review

Abstract

BackgroundIn order to adapt to societal changes, healthcare systems need to switch from a disease orientation to a patient-centered approach. Virtual patient networks are a promising tool to favor this switch and much can be learned from the open and user innovation literature where the involvement of online user communities in the innovation process is well-documented.ObjectivesThe objectives of this study were 1) to describe the use of online communities as a tool to capture and harness innovative ideas of end users or consumers; and 2) to point to the potential value and challenges of these virtual platforms to function as a tool to inform and promote patient-centered care in the context of chronic health conditions.MethodsA scoping review was conducted. A total of seven databases were searched for scientific articles published in English between 1995 and 2014. The search strategy was refined through an iterative process.ResultsA total of 144 studies were included in the review. Studies were coded inductively according to their research focus to identify groupings of papers. The first set of studies focused on the interplay of factors related to user roles, motivations, and behaviors that shape the innovation process within online communities. Studies of the second set examined the role of firms in online user innovation initiatives, identifying different organizational strategies and challenges. The third set of studies focused on the idea selection process and measures of success with respect to online user innovation initiatives. Finally, the findings from the review are presented in the light of the particularities and challenges discussed in current healthcare research.ConclusionThe present paper highlights the potential of virtual patient communities to inform and promote patient-centered care, describes the key challenges involved in this process, and makes recommendations on how to address them.

Views of Community Managers on Knowledge Co-creation in Online Communities for People With Disabilities: Qualitative Study

“…By publicly sharing their experiential expertise and health advice, individuals can provide important support to others in need [ 6 - 8 ]. Building on the findings of earlier work [ 9 - 13 ], this study proposes that in addition to the several purposes of OHCs, including their role as peer-support networks, these communities can also be used as platforms to promote patient participation in health care. By enabling patients to actively participate in the health care discourse online, OHCs can, in turn, also foster collaboration and knowledge co-creation between patients, researchers, health care professionals, and businesses, allowing for a multilateral exchange of knowledge and ideas to create new knowledge [ 14 , 15 ].…”

“…Our conceptualization of patient participation draws on the literature on user-driven innovation in general [ 22 ] and patient-driven innovation in particular [ 10 , 23 ], which recognizes the patient as an active collaborator in the health care innovation process. Informed by earlier work [ 24 ], we consider the health care innovation process to be concerned with the identification and introduction of new concepts and ideas related to services, processes or products that seek to improve treatment, diagnosis, education, outreach, prevention, and research with the ultimate goal of improving health outcomes, quality, safety, efficiency, and cost-effectiveness [ 9 ]. As such, our conceptualization of patient participation also relates to work in the field of codesign and co-creation in health care quality improvement, which actively involves patients, family members, and health care professionals in the planning and design of health services [ 25 - 27 ].…”

Online Value Co-Creation in the Healthcare Service Ecosystem: A Review

“…Although numerous businesses have started to harness the advance potential of online communities by utilizing them as an online environment for customer co-innovation and value co-creation, healthcare organisations are lagging behind (Amann et al 2016;Nambisan 2002). To date, more and more healthcare organisations are recognising the importance of OHCs as a significant platform of complementary service to improve the total quality of healthcare services delivery (Amann and Rubinelli 2017).…”

Enhancing Online Patient Support through Health-Care Knowledge in Online Health Communities: A Descriptive Study

“…However, OHCs possess distinctive features in comparison to conventional health-related websites. Studies validated that the potential utility of OHCs lies in their ability to promote patient-centred care [37,38]. Understanding proper measurement for successful OHCs is important for developing evaluation instruments for OHCs.…”