Impact on the individual: what do patients and carers gain, lose and expect from being involved in research?

Abstract

Background: Study feasibility and deliverability can benefit from involving patients and carers in the research process, known as patient and public involvement (PPI). There is less evidence on the experiences of patients and carers themselves and we require more information across a range of studies, health conditions and research stages. Aims: This study explored how patients and carers in eight diagnostic research specialties have been involved in research, their motivations and the impact involvement had on them. Method: 143 patients and carers across the Clinical Research Network (CRN) responded to an online semi-structured questionnaire (developed using participatory methodology). Quantitative and qualitative data were analysed. Results: A range of benefits were reported, including providing a life focus and an improved relationship with illness. Less positive experiences regarding time and money and lack of acknowledgement were also reported, along with suggestions for improvement. Conclusions: PPI confers many benefits on patients and carers which could increase PPI recruitment if made explicit. More involvement in study recruitment and dissemination would increase the effectiveness of PPI input. Involving a more varied socioeconomic demographic and at an earlier stage is vital. Financial support for lower earners and greater feedback following involvement should also be explored.

A mixed-methods study exploring the characteristics and needs of long-stay patients in high and medium secure settings in England: implications for service organisation

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Understanding the motivations of patients: A co‐designed project to understand the factors behind patient engagement

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What motivates patients and caregivers to engage in health research and how engagement affects their lives: Qualitative survey findings

“…Yet, the current engagement literature focuses mostly on the effects of engagement on research processes and outcomes, with less attention paid to the people engaged as research partners. A UK study found that patients and caregivers describe several altruistic and personal motivations for engaging in research, such as making a difference in patient care, giving something back to the National Health Service and gaining a better understanding of health problems . Other research, also conducted mainly in the UK, found that patients and caregivers report personal benefits of engaging as research partners, including feeling valued and empowered and gaining new skills and better knowledge of research .…”

“…Other research, also conducted mainly in the UK, found that patients and caregivers report personal benefits of engaging as research partners, including feeling valued and empowered and gaining new skills and better knowledge of research . Less commonly, patients report negative effects of engaging, such as feeling undervalued by researchers, feeling burdened by demands of the role and not knowing if their input makes a difference . Patient and caregiver motivations for engaging in research and their perceptions of how engagement affects their lives have not been explored on a large or systematic scale in the United States, where engagement is a newer practice and some aspects of health research and care delivery are unique.…”