People with intellectual and/or developmental disabilities in group care put at risk due to poor communication of healthcare information management

25 October 2017

  • Healthcare and safety of people with intellectual and developmental disabilities (I/DD) is threatened due to information silos and a lack of communication.
  • People with I/DD have complex health care needs often seeing multiple health care providers and rely at least partially on carers and family to manage and help them understand their health information.
  • Research indicates that their health information management is poorly communicated, un-coordinated and disjointed, with poorer outcomes for the patients.

Landmark research on the sharing of health information of people with intellectual and developmental disabilities (I/DD) living in group homes has found their care and safety is threatened due to information silos and a lack of communication, in a study released today.

The study, published in Health Communication, found their health information is often scattered across various systems, for example, with their GP, in a group home, or at a hospital.

These isolated systems often do not communicate or share relevant information with each other, which poses a threat to the safety and quality of care of this very vulnerable population.

“People with I/DD have more complex health needs, have a higher risk of long term conditions like diabetes or epilepsy, and are higher users of multiple health providers. Complicating matters is that in many cases the disabilities of this group mean many are at least partially dependent on family or carers to manage and even understand their own health information,” said lead author Dr Mary Dahm from the Australian Institute of Health Innovation.

“Despite these factors calling for a more sophisticated network of recording and sharing information, this research indicates that their health information management is poorly communicated, un-coordinated and disjointed, with poorer outcomes for the patients.”

The study found that although there are many policies governing how health information should be handled and shared across the different systems, the policies were often not reflected in practice.

“By addressing the gap between policy and practice, namely by increasing the documentation of health information and sharing that with fellow health providers of that patient, more can be done to ensure that people with I/DD do not fall between the cracks in terms of their health management,” said Dr Dahm.

This is the first study to describe the health information infrastructure of people with I/DD living in group homes.

The evidence involved a scoping review and synthesis of academic research, policies and health documents relevant in this setting including actual documentation used in group homes (policy and actual documents).

The study acknowledges that in cases where policy and practice are not aligned, additional documentation forms an increasing administrative burden for a thinly stretched and casualised disability support workforce, and impacts negatively on the safety and quality of care provided in supported accommodation.

The adoption of e-health technologies such as the electronic personal health records could facilitate the coordination of information across organisations and promote better integrated person-centred care.

The researchers recommend that any future proposals designed to solve systemic problems in supported accommodation need to take the findings of this review into account, specifically determining if actions taken either exacerbate or resolve the problems reported.

Dahm MR., Georgiou A., Balandin S., Hill S., Hemsley B. Health information infrastructure for people with intellectual and developmental disabilities (I/DD) living in supported accommodation: Communication, co-ordination and integration of health information. Health Communication. October 2017.

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