Cognitive Accessibility, person-centred care and gaining consent in dementia research

I recently took part in a podcast about consenting research participants. I enjoyed being part of this podcast because it was an opportunity for me to reflect on how I used to take consent in the past, how I am taking consent now and how I would like to do it in the future. I think that a few decades ago there was not much discussion about the process itself. I am glad that this is changing, and we are devoting more time to think of how we can bring our commitment to patient participation and person-centred care into the consent process.

My experience taking consent embraces 15 years now. I learned how to do it by shadowing my medical colleagues while undertaking my clinical training. I remember a doctor I once saw putting aside the standard consent form for vascular surgery. Sitting by the side of his patients’ bed and spending time making drawings, schemes and explaining the pros and cons of the procedure using real-life examples. I have used experiences to explain concepts to my research participants myself. For instance, I once took a patient with semantic dementia to the MRI scan, just to show her the machine and to explain how it works. This person did no longer know what an MRI scan was. This made difficult for her to ponder whether she accepted going through the scan as part of the procedures to take part in a study we were conducting. That day she relearned what an MRI scan was, and I was able to meet my duty of providing information in an accessible way. I have learned important lessons from every single patient who has looked at me in confusion during the consent process and has therefore challenged me to go above and beyond.

Over time I acquired more skills and learned more about how to improve the consent process. At the moment, if I am asked what the 3 critical elements of good practice in the consenting process are for me, I would say:

1) Co-production. Involving users in the production of consent material or influencing it, is important. For instance, in my group at the Dementia Research Centre, we have changed the way we take consent to people with Posterior Cortical Atrophy (PCA) following the suggestion of some of our participants. People with PCA experience a progressive loss of visual function and they used to find very frustrating having to go through a written consent form where they struggle to find the right place to put their signature. Now consent can be given in a verbal way, that we record and store, and this makes the process fairer and more comfortable for our participants. Complete co-production is, however, not always a realistic possibility. If you do not have the time or the resources to do so, you may still benefit from borrowing templates of consent forms that have been co produced or produced following inclusive standards.

2) A person-centred care (PCC) framework: “What matters to you?” is the motto of PCC and you can extend it to the consent process by checking whether you are meeting basic PCC principles. An example of this would be finding out what the preferences of the person are, for instance: do they want you to communicate with them in a specific way? like through an interpreter, or only when their families are present? Another thing we can do is monitoring what the experience of the person is being like during the consent process. For instance, by asking if they think the consent process is meeting their expectations about good standards of information or if they think there is shared decision-making.

3) A good understanding and practice of cognitive accessibility. Cognitive accessibility is the property that makes things easy to understand by everyone. Cognitive accessibility is a tool for inclusion and a right contained in the United Nations Convention on the Rights of Persons with Disabilities. Its practice involves planning and thinking about the consent forms in a pragmatic way. We can offer a cognitively accessible experience by using a wide range of strategies, for instance:

• preparing a well-done summary that highlights the most important information. The most fundamental points are usually, a) the research question, b) why the research study is being conducted and c) understanding and agreement with the procedure.
• avoiding verbal language when it proves unhelpful and resort to other tools, like creating animated videos, illustrating the research procedures, explaining concepts or processes using experiences and modelling and finding communication support in the family.

For anyone who wishes more guidance about how to create more cognitively accessible material, I would recommend 2 resources. One is the guide to produce easy-read documents edited by Changepeople.org. It is one of my favourites because they lead by example. It is a cognitively accessible guide itself that explains in a very clear and visual way how to prepare your document, how to make the writing accessible and the best way to add the pictures. It also comes with a checklist that helps you to confirm that you have met all the recommendations. The other resource is the European Standards of Easy Read Material edited by Inclusion Europe. These are comprehensive guidelines comprising standards for written information, electronic information, video information and audio information. They come with many examples and are available in many languages.

How do I see myself taking consent in the future? I hope I will be able to provide a consent experience as the one I would like to receive myself.  I also would like to expand my consenting skills during my current work on @RDS_ImpactStudy and hopefully to encourage other people to do the same.