Patient data work: filtering and sensing patient‐reported outcomes

Abstract

With digital patient‐reported outcome (PRO) tools in clinical practice, patients are given new tasks of providing data that aim at supporting and individualising care, simultaneously reducing unnecessary clinical visits. While the innovative potential of mobilising PRO data for care is increasingly explored, little attention is given to the efforts that the provision of PRO data rests on – that of the patients. Based on ethnographic fieldwork carried out among cancer patients receiving PRO‐based follow‐up care, we argue that with the increased reliance on patient‐generated health data, we need to consider patients’ data work. Drawing on emerging literature on healthcare professionals’ data work and the rich work in sociology and Science and Technology Studies (STS) on patients’ active engagement in shaping and managing care, we conceptualise PRO patient data work as two simultaneous processes: the process of data filtering – patients filter information to fit the envisaged recipient and purpose; and the process of data sensing – patients evaluate their embodied experiences. By doing so, we show that patients’ data work has implications beyond simply providing data that represent their experiences.

Patient perspectives on digital patient reported outcomes in routine care of inflammatory bowel disease

“…Participants in this study appreciated this functionality; it was believed to be one of the main benefits of the digital system and of great importance to the patients. The increased focus on psychological aspects of the disease has also been found in other studies of PROs [40][41][42]. In addition, the digital PRO's focus on extraintestinal symptoms was found to lead to a small increase in health literacy among some of the participants, which could support self-management [43].…”

Ensuring patient and public involvement in the transition to AI‐assisted mental health care: A systematic scoping review and agenda for design justice

“…Patients using digital technologies to give feedback about service quality 77 and patient‐reported outcomes 170 …”

“…Data‐intensive technologies could break new ground in PPI for service design and quality improvement, for example as media for relaying real‐time feedback on service quality 77 and patient‐reported outcomes (PRO), 170 or for engaging underserved populations who are less likely to engage with specific services for sustained periods of time. 73 , 93 , 146 …”

“…This is particularly important in relation to building shared knowledge about new contexts and opportunities for formal PPI, understanding the level of public awareness, preferences and choice, and tackling issues of trust and power/privilege between different actors in the system. Given that a lack of transparency about patient data remains a major concern for UK mental health activists, 80 collective data ownership arrangements 203 and open dialogues about the role of patient and public work in the production and interpretation of data 21 , 170 could help to build trust and willingness to engage in the design of AI‐assisted mental health care.…”

Achieving a useful and person‐centred diabetes consultation is a shared responsibility between diabetologists and people with diabetes: a qualitative study of perspectives from people with type 1 diabetes

“…Use of dialogue tools as part of consultations may provide diabetologists with valuable knowledge of preferences for content and approach among people with diabetes that can help them tailor consultations. It is, however, important to consider if such tools might create a new kind of ‘patient‐hood’, and whether some people with diabetes may need support in using them 25 …”