Barriers and Enablers to Integrating Patient-Generated Health Data in Shared Decision-Making From Health Care Professional and Patient Perspectives: Scoping Review.

The scarcity of research‐ready dental data (both within the United Kingdom and globally) presents a significant barrier to advancing understanding of oral‐systemic disease links and associations. This issue is a particular challenge in the United Kingdom because of the dearth of databases incorporating both dental and medical information from representative populations; this hampers observational research. While routinely collected medical datasets in primary and secondary care could be an invaluable resource for medical research (Herrett et al. ), dental research is severely limited by fragmented and non‐standardized reporting, privatization of data, and in some cases, continued reliance on paper records. The United States and South Korea have developed nationally representative datasets that include comprehensive clinical dental and medical information. For instance, the National Health and Nutrition Examination Survey (NHANES) in the United States and the Korea National Health and Nutrition Examination Survey provide extensive data on clinical oral health, comorbidities, and lifestyle, which facilitate valuable insights into epidemiological associations within dentistry (Oh et al. ; Centers for Disease Control and Prevention CDC ). Furthermore, US researchers have successfully developed a research‐ready, nationally representative dental electronic health records (dEHR) dataset (Thyvalikakath et al. ), underscoring the feasibility and benefits of such resources. However, extrapolating findings from these resources to the United Kingdom context is problematic because of the sociodemographic and cultural differences across nations. The UK Adult and Children Dental Surveys are conducted every 10 years to study the trends in the prevalence and determinants of oral diseases in England, Wales, and Northern Ireland. The surveys also collect information on dental attendance, clinical oral measurements, diet, as well as a self‐rated general health indicator (Chenery ). The long time period between this repeated cross‐sectional survey and the limited collection of data about other chronic diseases and comorbidities has hindered a robust data analysis to assess the links between oral‐systemic diseases. Previous research using Big Data has assessed associations between oral and general systemic health in the United Kingdom (Yi et al. ; Larvin et al. , ; Kang et al. ). However, findings from these studies are limited to self‐reported oral health indicators rather than clinical data to accurately define oral diseases. Other epidemiological studies have used surveys to explore oral health and quality of life (Tsakos et al. ). Sociodemographic data collected in dEHR from patients who attend primary care dental practices have also been explored (West et al. ). Recently, a single‐centre study of dental patients attending a tertiary clinic in Birmingham showed the advantages of using dEHR in research (Gadd et al. ). Despite the relatively small sample size ( = 166), the study showed that dEHR can be successfully used as a data resource in the United Kingdom. Developing a large‐scale, research‐ready dental dataset that capitalizes on the availability of routinely collected electronic records in the healthcare system will facilitate and advance dental research in the United Kingdom.