Needs-led research: a way of employing user involvement when devising research questions on the trust model in community home-based health care services in Norway

Abstract

Background This paper presents a user involvement process, called needs-led research, conducted as a part of a doctoral degree project aiming to explore research priorities and, ultimately, to develop a final top 10 list of questions relevant to the field of research. There is evidence of a mismatch between what user groups within a research field find relevant to study and what is actually being done. User involvement is a method that can accommodate this, and there is a growing attention and amount of research in this field based on an understanding that people who receive health care services, and their next of kin and clinicians, are uniquely positioned to contribute to research in order to understand their experiences better and improve the services. This paper presents a user involvement process in a small-scale study, referred to as needs-led research, which concerns the ‘performance of the trust model in community home-based health care services’. The process was conducted as part of a doctoral degree project. Method The needs-led research process is inspired by the James Lind Alliance (JLA), which focuses on bringing together service users, next of kin and clinicians on equal terms to explore research priorities. The process consisted of five-steps, each of which involved representatives from service users, next of kin and clinicians: 1) narrowing down the theme; 2) steering group meeting; 3) gathering input through a survey; 4) data processing and interim priority setting; and 5) final priority setting. Results Almost 200 participants contributed during the five steps, 294 inputs were gathered, and 35 participants voted for the top 10 list. The top 10 list is presented. Conclusion This paper provides an example of how user involvement can be employed to devise research questions that are relevant for clinicians, service users, next of kin and service providers concerning the ‘performance of the trust model in home-based health care’. It also outlines some strengths and limitations of the process. The needs-led research process shows that user involvement in research is feasible for developing research questions in small-scale studies. We hope that the top 10 list presented will encourage future research to address issues of importance regarding the performance of the trust model in community home-based health care services.

Patient and public involvement in Nordic healthcare research: a scoping review of contemporary practice

“…Among the 39 empirical papers, 26 (67%) were qualitative [ 15 , 24 – 48 ], four were case studies [ 49 – 52 ], five quantitative [ 53 – 57 ], and four multi-methods studies [ 58 – 61 ]. The study populations from the empirical papers were patients with cancer (n = 8) [ 15 , 27 – 29 , 45 , 51 , 59 ], mental health illness (n = 8) [ 34 , 35 , 39 , 42 , 46 , 49 , 50 , 61 ], cardiovascular disease (n = 2) [ 24 , 54 ], kidney failure (n = 1) [ 52 ], traumatic brain injury (n = 1) [ 38 ], reproductive dysfunction (n = 1) [ 30 ], women with prior gestational diabetes mellitus (n = 1) [ 43 ], older adults and geriatric disorders (n = 7) [ 25 , 26 , 36 , 40 , 47 , 56 , 57 ], stroke (n = 2) [ 53 , 55 ], ankylosing spondylitis (n = 1) [ 44 ], persons living with diabetes (n = 1) [ 60 ], and patients with rehabilitation needs (n = 2) [ 31 , 48 ].…”

“…The study populations from the empirical papers were patients with cancer (n = 8) [ 15 , 27 – 29 , 45 , 51 , 59 ], mental health illness (n = 8) [ 34 , 35 , 39 , 42 , 46 , 49 , 50 , 61 ], cardiovascular disease (n = 2) [ 24 , 54 ], kidney failure (n = 1) [ 52 ], traumatic brain injury (n = 1) [ 38 ], reproductive dysfunction (n = 1) [ 30 ], women with prior gestational diabetes mellitus (n = 1) [ 43 ], older adults and geriatric disorders (n = 7) [ 25 , 26 , 36 , 40 , 47 , 56 , 57 ], stroke (n = 2) [ 53 , 55 ], ankylosing spondylitis (n = 1) [ 44 ], persons living with diabetes (n = 1) [ 60 ], and patients with rehabilitation needs (n = 2) [ 31 , 48 ]. In four studies, no specific disease population was described [ 32 , 37 , 41 , 58 ]. In 21 studies, solely patients were involved [ 27 , 29 , 30 , 34 , 35 , 39 , 40 , 44 , 45 , 47 , 48 , 51 , 52 , 55 – 57 , 61 – 65 ], six studies involved public [ 32 , 36 , 38 , 42 , 46 , 58 ], 19 studies involved a combinatio...…”

“…In four studies, no specific disease population was described [ 32 , 37 , 41 , 58 ]. In 21 studies, solely patients were involved [ 27 , 29 , 30 , 34 , 35 , 39 , 40 , 44 , 45 , 47 , 48 , 51 , 52 , 55 – 57 , 61 – 65 ], six studies involved public [ 32 , 36 , 38 , 42 , 46 , 58 ], 19 studies involved a combination of patients and public [ 15 , 24 – 26 , 28 , 31 , 41 , 43 , 49 , 50 , 53 , 54 , 59 , 60 , 66 – 70 ] and ten studies did not report whether they used patients, public or both [ 2 , 33 , 37 , 71 – 77 ].…”

“…Theoretical underpinnings of PPI were reported in Table 4 and included 25 papers. Twelve papers reported using a framework originating in the UK [ 27 , 28 , 41 , 42 , 51 , 54 , 55 , 58 , 60 , 61 , 69 , 79 ]. One study used NIHR framework to engage patients at different phases of the research process [ 51 ], while Staats et al used it as a project design and management guideline [ 69 ].…”

“…3 . This included interviews [ 15 , 24 , 25 , 27 , 29 , 36 , 39 , 41 – 43 , 47 , 52 ], focus groups [ 24 , 27 , 30 – 32 , 34 , 35 , 40 , 61 , 65 , 67 ], user panels or discussions [ 25 , 38 ], workshops [ 29 , 41 , 48 , 51 , 54 , 58 , 60 ], written communications [ 15 , 33 , 49 – 51 , 58 , 59 ], surveys [ 53 , 54 , 58 , 60 , 61 , 70 ] and steering groups or advisory boards [ 40 , 44 , 58 , 62 , 64 ].

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