Table 2.

Problems identified by respondents

Theme	Total across areas n	Research ethics n	Research governance n	Information Governance n	Key quotations
Lack of integration of systems	139	49	85	5	Endless stream of middle managers in different organisations requiring the same information from me, not trusting information given elsewhere and not being in a position to make decisions (RG)
Delays/ lengthy process	141	49	66	26	The lead time required to obtain data from NHSD precludes a great deal of responsive, policy-relevant research (IG)
Bureaucratic/ repetitive/ laborious	103	56	13	34	The IRAS form is far too long and is really onerous to complete. So much of the detail requested is available in the protocol and patient information materials so it is just repetition. Why submit your protocol and repeat it all in a form? …. All of this unnecessary admin just delays submission (RE)
Disproportionate for low risk studies/ inflexible	95	71	18	6	So many forms and boxes to complete for ethics for a simple qualitative interview study. The whole system started with RCTs and has never really moved beyond them (RE)
Inconsistent	35	23	-	12	Unwarranted variance in interpretations of differing Information Governance teams (IG)
Out of touch/ unethical/ excluding	34	22	12	-	Procedures often exclude vulnerable people due to definitions of capacity whereas participatory research takes consent as a process throughout the research .… there are no tiered procedures that enable applicability to the research at hand. One size doesn’t and can’t fit all. (RE)
Lack of clarity	42	21	-	21	Poor understanding of the law around IG, resulting in conflicting advice and policies even within the same organisation. (IG)
Attitudes of staff/ committees: risk averse/ defensive/ aggressive	21	5	16	-	The defensive attitude and slowness of many R&D departments, and their ability to make you feel like you’re a dangerous threat (RG)
Lack of specialist understanding/expertise	17	17	-	-	Lack of knowledge from RECs about research on sensitive topics e.g. palliative care (RE)
Data sharing agreements	14	-	-	14	IG departments can be very slow to process applications to conduct research. Data sharing across NHS Trusts can be extremely bureaucratic (IG)
Expensive	13	4	-	9	Expense of accessing datasets sometimes means that research is not feasible (IG)
Frequent changes to system	11	7	-	4	Every time I come to another project the process and the forms have changed yet again so you can’t even used what you learned last time to help you (RE)
Availability of help/support	8	8	-	-	Challenges in finding the right person to speak with about queries or indeed finding anyone (RE)
Additional delays for amendments	7	-	7	-	The fact that you have to get C&C again with every amendment is a complete nightmare. (RG)
Student research requiring more guidance	7	-	7	-	Student research applications not meeting NHS HRA standards. Lot of resource invested in explaining the system and referring students back to their HE to refine their applications (RG)
Not sticking to remit	6	6	-	-	Ethics committees requesting changes to format and designs, which has nothing to do with ethical considerations (RE)
Poorly designed system/not user friendly	6	6	-	-	The IRAS forms are not easy to complete as you can only see two lines at a time! (RE)
Different processes for research/ service evaluation/ improvement	6	6	-	-	The definition of the distinction between [service evaluation or research].does not make sense and is not consistent between University and NHS documentation, leading to the risk of game-playing (RE)
Financial review additional burden	6	-	6	-	SoECAT not being accepted despite hours of work creating and getting approval. Pharmacy delays, additional local documents being requested, individual departments asking for funding despite SoECAT and saying that they don’t see any research funding. (RG)
Pedantic	5	5	-	-	Minor changes being requested to documentation which are not really needed (RE)

Abbreviations: RE - Research Ethics, RG – Research Governance, IG - Information Governance.