Skip to main content

Table 4 Thoughts and ideas from patient/public contributors

From: The value of the patient and public contribution to cancer research UK’s review of covid-19 impact on its clinical research portfolio

Research Group Portfolios:
1. This review was about the big picture in July; but what does it look like for September and onwards? Is there an agenda item for your next RG/subgroup/workstream meeting?
2. In particular are there any studies where returning to previous recruitment levels may be problematic, and if so, are the issues at particular sites or is there a more general challenge for patients which you may be able to address (eg by promoting the restarted study across personal networks)?
Current Studies:
3. Is your study being reviewed in November or next April, and are there actions to be taken in preparation? Many of the studies reviewed in July had very optimistic new timelines; are they realistic as we move into autumn?
4. Is it worth advising the funder now that a costed or no-cost extension may be needed? If the study is finished, what is the timescale for analysis and write-up? Does that include the QoL measures or just the primary/intervention outcomes?
5. For studies where standard-of-care may have changed, how temporary is it? If the change is likely to be permanent, will the study results still be relevant? Will the study still recruit if the “standard” arm is no longer the same as when the study was designed? Does the randomisation need changing in ratio? Will some sites drop out, with the implications for patient choice?
Doing Things Differently:
6. Do the ad hoc Covid-19 arrangements offer new opportunities and/or challenges for redesigning current studies and designing new ones, in particular offering patient choice on remote consent, remote follow-up, and moving QoL online?
7. Should academic studies look more closely at industry’s adoption of wearables and apps to record real-time PROMs and real-world data?
8. Would any of these changes help address current issues of disadvantage and under-representation? Or might they disadvantage different groups?
9. Are there now opportunities for sub-studies to address the NCRI’s patient-derived Living With and Beyond Cancer research priorities? https://www.ncri.org.uk/lwbc/ Should QOL/PROMs that include psychosocial elements/experiences become standard in all trials, and if so, which measures?
10. What opportunities does the restart offer to embed research choices into patient/clinician conversations, more than they already were, as recommended in the NCRI Consumer Forum’s 2012 report “Action on access” https://www.ncri.org.uk/wp-content/uploads/2012-NCRI-Action-on-access-report.pdf