Background Key policy drivers worldwide include optimizing patientsÕ roles in managing their care; focusing services around patientsÕ needs and preferences; and providing information to support patientsÕ contributions and choices. The term information need penetrates many policy documents. Information need is espoused as the foundation from which to develop patient-centred or patient-led services. Yet there is no clear definition as to what the term means or how patientsÕ information needs inform and shape information provision and patient care.
It is essential to identify the information topics that are important to chronic kidney disease (CKD) patients to provide 'appropriate' information that will improve their knowledge, promote independence and encourage them to self-manage their illness. This paper, through a systematic review, explores the existing body of evidence on the information needs of CKD patients to identify information topic areas important to these patients and highlight factors that influence a patient's information needs.
Information and relational continuity needs of women can be met using professionally moderated, social media based groups. They may provide an alternative means of facilitating the continuity that is so often lacking in traditional models of care.
Ti t l eMi d wif e-m o d e r a t e d s o ci al m e di a g r o u p s a s a v alid a t e d info r m a tio n s o u r c e for w o m e n d u ri n g p r e g n a n cy
Introduction: The number of people with kidney disease using social media to search for medical information and peer support is increasing. IgA nephropathy (IgAN) predominantly affects young adults, demographically the biggest users of social media. This article presents an innovative analysis of social media interactions to identify unmet education and information needs of patients with IgAN.Methods: Following ethical approval for the study, the IgAN Support UK Facebook group (https://www. facebook.com/groups/915274415226674) granted us permission to anonymously collect and analyze 1959 posts and comments from 498 group users. An initial patient focus group and quantitative wordfrequency analysis created an initial categorization matrix that was iteratively refined after serial analyses of the social media database to generate a final categorization matrix of needs. We evaluated narrative data relating to each identified category to define patient narratives relating to each area.Results: A large number of information gaps and unanswered questions were identified relating to the following: diet, symptoms, diagnosis, treatment, and patient comorbidities. Patient-clinician communication and the presentation of information were also drawn out as cross-cutting issues. These themes differed significantly from those identified from the traditional patient focus group, highlighting the value of this novel method for interrogating social media data to understand unmet patient needs.
Conclusion:Social media data are untapped and valuable resources that can be used to better understand patient information gaps, leading to the generation of targeted materials to address unmet educational needs. This innovative approach could be replicated across other health conditions.
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