2 Research recommendations

We have made the following recommendations for research, based on our review of evidence, to improve NICE guidance and patient care in the future.

2.1 Reasons for refusal for consent

Why do families refuse to give permission for organ donation?

Why this is important

High-quality research using mixed methodology is needed to identify the reasons behind family refusal to see if there are factors that are changeable (for example, poor understanding of the process, medical mistrust, 'knee-jerk' response that is later regretted). The study could be, for example, a multi-centre observational study where all family members (those that did and those that did not give permission for their deceased loved one's organ donation) are followed up 6 months later.

Such research could determine whether those participants who gave permission for donation have higher perceived benefits scores, lower prolonged grief scores and higher quality-of-life scores than those who did not.

2.2 Improving rates of identification and referral of potential donors

What are the key components of an intervention to improve identification and referral rates?

Why this is important

Currently, the evidence for improving identification and referral rates consists mainly of observational reports of complex interventions, with most studies being of limited follow-up. Further research is needed to identify the components, or combinations of components, of the interventions that are effective in increasing identification and referral rates. These studies should have an appropriate length of follow-up to ensure a sustained impact in the longer term.

2.3 Improving consent rates

What are the key components of an intervention to improve consent rates?

Why this is important

Currently, the evidence for improving consent rates consists mainly of observational reports of complex interventions, with most studies being of limited follow-up. Further research is needed to identify the components, or combinations of components, of the identified interventions that are effective in increasing consent rates. These studies should have an appropriate length of follow-up to ensure a sustained impact in the longer term.

2.4 The experience of consenting for organ donation

Does a positive experience of approach and process of consent for families increase consent rates?

Why this is important

It is generally accepted that if families have a more positive experience of the approach and process of consenting, then rates of consent will increase. However, no high-quality evidence was identified to support this perception. Further research is needed to confirm this assumption and, if true, to identify those components of the approach and process that are key to improving the experience, and hence the consent rate.

  • National Institute for Health and Care Excellence (NICE)