Author(s): Muhammad SN*, Orzechowska K, Gardener , Gardner, Christine, Carson and McGraw
Education and information seeking is pinnacle for patients with Long-Term Conditions (LTCs) like Chronic Kidney Disease (CKD) to take ownership of health and disease and navigate healthcare between health sectors. Patient and Public Involvement (PPI) are key to help understand gaps in health education.
Aims/ Objectives: 1) Involving patients between two support groups to help understand which topics and subjects are pertinent to CKD patients; 2) Involving patients to understand whether, retrospectively there has been an educational neglect in healthcare; and 3) To understand how healthcare and education for CKD patients could be more integrated.
Methods: Two PPI workshops were implemented (May and June 2019) after reviewing NIHR INVOLVE best practice guidelines. Fourteen (14) topic tags were applied over 1-month (March and April 2020) between the Renal Patient Support Group (RPSG) (est.2009) and the Kidney Disease and Renal Support (KDARs) (est.2014) for Kids platforms.
Ethics: Group disclaimers encouraged informed consent. GDPR (2018) guidelines were implemented to ensure best practice surrounding confidentiality and data protection.
Results: Thematic Analysis was used to highlight findings, according to over-arching themes having used Nvivo-12 software to code and help understand where there are healthcare educational inefficiencies. Five themes were identified through this study including 1) Using Different Mediums to Collect Qualitative Data and Understanding Healthcare; 2) Reliability and Validity of using the Internet to Collect Data; 3) Healthcare, Patient and Public Involvement and Maintaining Confidentiality through Online Methods to collect Qualitative Data; 4) Advantages, Disadvantages and Limitations to Online Data Collection and Peer Support Groups and 5) Using Qualitative Methodology to Understand Educational Needs for CKD Patients.
Discussion: Wider Allied Health Professionals (AHPs) could increasingly find themselves taking on roles, particularly where involvement is increasingly dependent bridging educational gaps and ‘alleviating misinformation’ through technology and ‘online spaces’.
Conclusion: This is the first UK retrospective study that examines educational gaps between online paediatric and adult CKD patients close to two decades (16 years), and highlights where further PPI-focused research would help understand where healthcare requires investment.
