#OTalk Research 3rd Dec 2019 – Inclusive research for people who lack capacity to consent

This month’s #OTalk Research will be hosted by Dr Naomi Gallant (@naomi_gallant) on the important topic of how we can include people who lack capacity to provide informed consent in our research. Here’s what Naomi has to say:

The Mental Capacity Act (2005) stipulates that in order for a person to be deemed to have the mental capacity to make a decision they must be able to:
– understand the decision they are making and the information relevant to it
– retain the information relevant to the decision
– weigh up or use the information to inform the decision making
– and be able to communicate their decision (by any means)

(https://www.hra.nhs.uk/planning-and-improving-research/policies-standards-legislation/mental-capacity-act/)

One of the most important principles of the assessing mental capacity is that each assessment is decision and time specific. Somebody may have the capacity to understand, retain, weigh up and communicate what they would like to eat or drink in a set moment but may not be able to use the same thought processes to make the decision about a discharge plan home from hospital. The ability to make any decision can also fluctuate.

Understanding and retaining the information needed to make an informed decision to participate in research can be a complicated one! As a group, people who lack capacity to consent to participate in research are often excluded. As clinicians we may be familiar with the MCA principles and feel confident performing mental capacity assessments. Researchers on the other hand, may not all have the clinical experience and so assessing capacity becomes a cumbersome part of recruiting participants for research. Consequently, there is a huge gap of important people’s voices in important research projects.

I’d like to explore the following questions in the Twitter Chat: