Table 2.

Embedding service user and stakeholder involvement within translational research

Category that underpins reason for involvement1	Reason to embed involvement	Relevant phase(s) in translational pipeline	Methods and strategies for embedding involvement2	Indicative literature
Scientific	Service users’ knowledge and experiences of use in agenda setting, problem definition and hypothesis construction	T1	Creation of ‘small innovation networks’ devoted to the transition to involvement, and comprising biomedical researchers, service users and other stakeholders, experts in participation and representatives from research funding agencies and government organizations Collaboration with patients’ organizations Dialogue Model: democratic interaction between all stakeholders in the service of an integration of different knowledge sources	Abma and Broerse 41 Ayméet al. 32 Baart and Abma 36 Caron‐Flinterman et al. 35 Wright et al. 40
	Service users’ knowledge and experiences of use in defining treatment targets and developing outcome measures	T1–T2	Participatory research (e.g. service user‐led focus groups to generate outcome measures) Priority setting partnerships (that join clinician organizations and patient/carer organizations)	Buckley et al. 42 Milne et al. 43 Rose et al. 44
	Service users’ knowledge and experiences of use in design of medical devices/technologies	T1–T2	Direct and active collaboration and interaction between users and producers in early stages (concept and idea generation) rather than only or mainly in late stage of product lifecycle	Dabbs et al. 19 Gagnon et al. 45 Grocott et al. 22 Shah and Robinson 20 , 21
	Service users’ knowledge and experiences of use in trial design and consent processes	T1–T2	Stakeholder representation on trial steering committees Combination of quantitative and qualitative methods (e.g. through consultation, focus groups and questionnaires with service users)	Ali et al. 46 Guarino et al. 31 Koops and Lindley 47 Langston et al. 48
	Service users’ knowledge and experiences of use in development of health services research/implementation science/dissemination	T2–4	Principles of successful service user involvement in health research outlined in Telford et al. 49	Crawford et al. 30 Fudge et al. 50 Nilsen et al. 51 Simpson and House 52
Scientific/pragmatic	Assistance with recruitment into trials	T1–T2	Involvement of consumers in trial governance so that they can then provide advice to trial participants, and promote trial to prospective participants	Langston et al. 48
Ethical/socially just	Translational research that uses biomarkers for potential diagnostics, therapeutics and genetic testing raises ethical issues related to risk, susceptibility and stigma/discrimination	T1–T4	Interdisciplinary collaborations between scientists, clinicians, social scientists, ethicists, legal scholars, policy makers, service users and those involved with industry/commercialization of biomarkers	Barr and Rose 53 Singh and Rose 27
	Public/civic engagement with biomedicine	T1–T4	Citizens’ juries Town hall meetings	Nowotny et al. 54
	Involvement can empower patients/service users (which can in turn improve health)	T1–T4	Shared decision making (reduction of power differentials)	Angelmar and Berman 55 Boote et al. 56

¹These categories are overlapping rather than discrete.

²These include methods and strategies that are evidence based, as well as those that relevant literature suggests on theoretical grounds.