Mental health and the language of pain: working with lived experience to develop a pain lexicon

Mental health and the language of pain: working with lived experience to develop a pain lexicon

Study Status: In progress
Study Website: Pain and mental health

Pain is a growing area of research and known to affect one in three adults, making it a common reason for accessing healthcare resources. However, it is an ambiguous term and is not represented very well in the codes used within the structured fields of electronic health records. Researcher Jaya Chaturvedi is using Natural Language Processing (NLP) methods to explore the relationships and outcomes associated with pain and mental health diagnoses such as severe mental illness (SMI), depression and anxiety. A large part of this research is being co-designed with a patient public involvement (PPI) group.

Co-design with a patient and public involvement group

Pain is a very subjective and personal experience. This makes it essential to consider the lived experiences and priorities of people suffering with pain.  The PPI group includes patients with lived experience of chronic pain and SMIs. A lexicon of pain terms has been developed and designed in collaboration with the group. The PPI group evaluated the lexicon to ensure it makes sense from their perspective and includes terms that they might use to describe their pain. The researchers used this lexicon to select relevant pain-related documents from the CRIS database of records.

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