Identifying Integrated Health Services and Social Care Research Priorities in Kidney Disease in Wales: Research prioritization Exercise

For which topic were research priorities identified?

chronic kidney disease

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

CKD has no cure and can have a consider able impact on patients health (eg, multiple comorbidities, greater risks of infection and frailty), well-being (eg, depression, anxiety, isolation), quality of life (eg, frequent dialysis sessions, reduced mobility, unemployment) and family relationships (eg, perceptions of burden, guilt, shame, intimacy).4 5 Years of living with CKD have different burdens depending on the person, for example, age, socioeconomic status, gender and care and support at home.6 7 In Wales, health policies are integrated with social care and recent policy agendas are seeking to address the social contexts of chronic conditions first in order to reduce and relieve burdens on healthcare systems.8 Yet research in these areas is overall lacking in the context of a Welsh health and social care system, and as a consequence patient and family involvement in research priority setting for health services and the social contexts of kidney disease has yet to be established. Therefore, current research may not be addressing ques tions that are meaningful and important to patients and their families. In addition, we do not yet know which health services and social care contexts of living with kidney disease matter the most to patients and family members.

What was the objective?

to identify the shared research priorities of patients, caregivers and multidisciplinary renal health and social care professionals across Wales for integrated renal health and social care in Wales

What was the outcome?

a list of 38 research questions

How long did the research prioritization take?

No information provided.

Which methods were used to identify research priorities?

workshop

How were the priorities for research identified exactly?

Step 1: two workshops, workshop 1: participants were asked to identify and agree the key social care research priorities in kidney disease in Wales, presentations, small group work, posit notes and flip charts, and feedback were used to elicit responses, participants voted on most important topics, 106 research questions, topics, themes and areas were identified, workshop 2: long list of research priorities was drawn up taken from key documents in renal health and social care and shared prior to the meeting, five worksheets were prepared and shared, results of the two workshop were combined: resulting in 38 individual research questions broadly grouped into 10 research themes

Which stakeholders took part?

Academics, patients, family/carers, renal healthcare professionals, local authority council, renal charities, third sector organizations. Workshop 1: 81 participants. Workshop 2: 8 participants.

How were stakeholders recruited?

Delegates were purposively sampled from WKRU contacts. Invites were sent out via emails, telephone calls and face-to- face communications.

Were stakeholders actively involved or did they just participate?

Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.