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P216: Combining Real-World Data Sets to Deepen Understanding of the Patient Experience

Poster Presenter

Stephanie Terrey

Sr. Director, Patient Experience
CorEvitas, LLC
United States

Objectives

Share an innovative approach to cultivating an in-depth and multifaceted understanding of the patient experience through online health communities by combining social dialogue analysis, quantitative PRO data, as well as demographic and diagnosis information.

Method

Social dialogue analysis was conducted using the user generated content from online mental health patient communities. Community members were also asked to complete PROs and provide data such as demographics, diagnosis and treatment history.

Results

This research applied a mixed methods approach to analyzing data cultivated from online patient mental health communities. Qualitative data for this project are being gathered from user generated content within the online mental health communities. Members of the community engage asynchronously: voicing opinions, sharing experiences, and asking each other questions. In Q4 2022, over 16,000 active members of the communities generated over 37,000 posts and comments. Content was analyzed and coded, revealing themes around coping strategies, treatment, triggers, and symptoms. Quantitative data include self-reported information on diagnosis, treatment, and demographics, as well as completion of PROs and bespoke questionnaires. We are able to link all of these data sources to investigate how the content that members share spontaneously and unprompted within the community can be combined with their demographics and PRO data to enhance the value of the insights. While the analysis is ongoing, the overall result is that we are building a multi-faceted, in-depth, and longitudinal understanding of the lived patient experience. This research will not only share insights on patients living with mental health conditions but also serve as a demonstration of how this methodology can be applied to other therapeutic areas.

Conclusion

As patient online health communities continue to grow, patients are freely and regularly sharing their attitudes, opinions, and experiences with each other online. Traditional qualitative patient experience research involves asking open ended questions in service of defined objectives. However, by leveraging online health community content, we are showing how patients, unprompted, talk to each other and what they choose to discuss. Our work demonstrates an innovative way in which this qualitative data can be layered with quantitative data to illuminate additional facets of the patient experience. By adding to information about the community members’ characteristics, diagnosis and treatment history, as well as how they respond to PROs, we conclude that the valuable insights derived from this methodology provide unique opportunities to truly understand patients and their needs. Further, the opportunities that this methodology provide are numerous. Because the cohort of patients are members of the online community, we can post discussion topics to prompt conversation among members. We can respond to their posts to ask follow up questions. We can administer polls and questionnaire of our own design to dig deeper into areas of interest. Additional information about the specific analysis with this population will be shared.