Ethics of Technology and Dementia
In this short video, Phil Joddrell gives an overview of research ethics for Innovation Fund projects.
Ethical approval from a Research Ethics Committee
You will need ethical approval from a Research Ethics Committee (REC) if your proposal includes a research study involving people with dementia as participants. You will need this approval in place prior to beginning your project (before advertising, recruiting participants, or collecting any data).
There are NHS RECs and academic RECs. You need approval from an NHS REC if your study involves NHS services (patients, staff or premises), or if your recruitment of participants includes people who lack capacity to consent to be involved in research. Otherwise a university/institutional REC would be appropriate. Keep in mind the timescales for applying to a REC, and that it is usually much longer for NHS RECs (which would likely be unfeasible for the 12 month delivery of these projects).
Guidance on the materials will be available from the institution that hosts the REC. Most RECs will provide guidance on the standard formatting of essential documents such as consent forms and participant information sheets. Keep in mind that these templates may not always present information in the most accessible way, and often it is possible to have alternative formats provided that certain key pieces of information are retained. See further information on this in the resources section of this guide.
Some projects do not need REC approval. Formal REC approval is not required for Patient and Public Involvement (PPI) activities, audits and evaluations, or research that relies exclusively on fully anonymised pre-existing datasets.
Plan for ethics approval (if required). In your application we would expect to see evidence that you have considered whether you need approval from a REC, which REC you will use, and how securing ethical approval fits within your proposed time frame.
Ethical considerations for research with people with dementia and technology
Consent for the use of technology. Is the person with dementia fully informed about the presence and purpose of the technology?
Confidentiality of data. If the technology involves the collection of data, can you ensure that this information is kept confidential, or only shared with people approved by the person with dementia?
Safety of the person with dementia. Does the technology present any risk of harm to the person with dementia?
Privacy and independence. Keep in mind that the independence of people with dementia should be the focus of the proposed technology, but also consider how this impacts on their right to privacy.
Design for accessibility whilst avoiding stigma or infantilisation. Accessibility should be a key consideration for any technology designed for people with dementia, but this should not lead to designs that may be stigmatising or patronising.
Realistic claims of the benefits of the technology you are including. Strike a balance between presenting the potential of technology and the problem it is addressing without ‘over-selling’ it.
The best way each of these issues can be appropriately considered is through co-production with people with lived experience.