Patient participation and genetic risk information
The RISK-UPDATE (Identification of the process by which patients recall and update their subjective risk assessments for various diseases to incorporate objective genetic risk information) project has studied patient recall and adoption in the case of genetically linked Alzheimer's disease and breast cancer. Furthermore, the researchers investigated links between patients' lack of recall and characteristics. These included numeracy, emotional and experiential aspects where another relative has the mutation, for example. The successful work on breast cancer resulted in five peer-reviewed papers. Journals included the high-profile Psycho Oncology, Judgment and Decision Making, Health Expectations and Journal of Genetic Counseling. During the course of RISK-UPDATE, the research group expanded to incorporate more eminent scientists in related but different fields. The collaboration will result in two further papers on willingness to test for breast cancer and women's ability to choose the risk format that promotes understanding. The final results of the project showed a distinct difficulty for patients in understanding and interpreting risk information from both genetic counselling and medical information generally. Outcomes are expected to show how to simplify the presentation and communication of medically sensitive information on genetic predisposition to diseases. Research results from the RISK-UPDATE project are extremely relevant in today's scenario of increasing patient empowerment and patient-centred care. The study spanned institutions globally and collaborated with key academics and professionals in the health care arena.
Keywords
Patient, genetic risk, information, Alzheimer's disease, breast cancer
