Recognising complexity: Foregrounding vulnerable and diverse populations for inclusive health information management research.

Abstract

Good access to and management of high-quality health information is essential for people with disabilities and/or multiple health conditions. This includes access to information about health and personally held information that can be stored and shared across their health providers (Hemsley et al. 2016). Public digital health technologies (e.g., blogs and websites, social media, and mobile technology apps) as well as personally-controlled electronic health records should help people with disabilities and multiple health conditions make better use of health information and engage in storing and sharing that information at critical points in their health pathway. However, the highly diverse populations of people with disabilities and multiple health conditions, as citizens and members of the general population, are often absent from, or in the background of, initiatives to improve people’s access to health information for informing health decisions. The foregrounding of “less visible” populations with disabilities and/or multiple health conditions means making them a priority, including them in health information initiatives and research, and reporting specifically and respectfully on their needs. In making these diverse populations more visible, health information management professionals could lead the charge to a more inclusive and just health system. Hoyle (2018: 48) emphasised this, and questioned the primacy of diagnostic constructs over aspects of the human experiences: “More fundamentally, the conceptual foundations of health information in terms of “diagnostic” constructs are creating limitations: Why should a medical diagnosis be privileged as the key descriptor of care, over disability or other aspects of the human experience? Who gets to say what matters, and how and by whom is that translated into meaningful information? These are important questions on which the health information management profession is well placed to lead”.