We must share and interpret information effectively

FOR a person with a severe or profound disability something as simple as a meal plan outlining safe foods and meal-time procedures may save their life. Overlooking or ignoring it can be a death sentence.

We know that there have been cases in New South Wales in which people with a severe disability living in residential care have been recommended certain foods and meal-time assistance but died from aspiration pneumonia as a result of their care giver not using the information in the plan to deliver a safe meal. Inhaling food or saliva into the lungs is a terrible way to die and is mostly avoidable.

People with complex and chronic conditions and disabilities, whether young or old, require their health care needs to be met no matter which health care settings they happen to be accessing, whether in primary care, in hospital or in residential care facilities and regardless of private, public or hybrid private/public funding models. Often, this does not happen, as illustrated by the example provided.

Incidents such as this emerge as a result of a health care system that does not collate, share and implement care and safety information as well as we would like. This is particularly problematic for people of all ages with complex or chronic conditions or with profound or severe disabilities.

Patients with disability and their families use a variety of services such as hospital or residential care, GPs and allied health professionals. As a result, much of the information about their health care and functional needs builds up in silos and is not necessarily shared, accessed or understood by all the people involved. There are examples of a meal plan that was written by a speech pathologist and neatly filed in the patient’s records, but not actually used by workers at the residential care facility to deliver a safe breakfast, lunch or dinner.

Too much policy and not enough practice?

Health departments, decision makers in health facilities and clinicians are excellent at developing and publishing best practice guidelines, clinical protocols and policies. For example, there are at least 170 guidelines and more than 250 policy directives on the NSW Health website.

Why is it then that only about 60% of care provided to patients is in line with evidence-based guidelines (here, here and here)? This figure has remained static for at least the past 20 years, despite an ever-increasing number of publicised guidelines, decision flowcharts, quality care policies and quality improvement projects.

Tackling this requires us to change our thinking, to not only consider what health care we are delivering, but how we deliver it, before we have a chance of genuinely improving care for patients and building a sustainable health system.

So, despite the advent of electronic health records and decision support tools, health care institutions all too often store crucial information in isolated silos, with limited exchanges with other facilities, institutions and individuals involved in care, including the patient themselves.

This means that we have a generic problem across the system – even when needs are adequately managed in one care setting, a lack of connectedness between settings increases the safety risk for people with disability. This includes, for example, admissions to hospital where staff may have limited understanding of the unique safety considerations in caring for patients who are medically complex. Consequently, when safe meal time recommendations are not communicated by direct support workers, hospital staff may fail to realise that this crucial care information is missing.

What do we need to do?

To address this problem, it would be incumbent on us to build multidisciplinary teams with a shared understanding of chronic, complex and disability care needs. This would mean bringing together skilled individuals who can work within the community and in care settings with individual patients to activate and smooth their health care journey. They would be a virtual (or actual) conduit for critical information and sense making to flow between different providers for the benefit of the patient.

Even from afar, in its head office in Paris, the Organisation for Economic Co-operation and Development has recognised the need for the Australian health care system to become more integrated. It has recommended that Australia break down highly hierarchical structures among broad professional groups (doctors, nurses, allied health, support staff, decision makers) by working with professional organisations and medical colleges to support interdisciplinary, patient-centred practice and models of care.

We have seen this work when people with disability and their care givers along with other stakeholders, such as the residential institution and health professionals, are all jointly involved in the management of health information and aware of critical care plans.

Further realising the potential of best practice care through integration of information and patient engagement in health decisions would require us to ensure we addressed a number of key points. Chief among these are: communication support for people with disability, active leadership within each health care setting and, most importantly, continuing communication and information sharing across different care settings that the patient may need to access as part of their journey through the health system.

The need for health system and culture reform

To deliver care while keeping patients safe, the strategy would be to move health system culture towards one that is reflective, transparent and learns from mistakes while maximising what already works well. To achieve this, it is important to build trustworthy relationships in the service of the patient.

At the heart of this are system-based solutions including integrating care services for the patient and using decision support tools that not only channel people into the right care pathways but also capture the attention of care providers at critical points.

This requires suitable investment in health systems and health services research to test interventions and measure impacts of system-based solutions to ensure that when we implement interventions, they actually work in the real world.

Most of all, the system will respond if we learn to effectively share and interpret information through sophisticated data exchange systems that reach all parts of the health system. It’s a complex challenge with a simple aim: to maximise quality care and outcomes, and reduce low value care and harm.

Yvonne Zurynski is Associate Professor of Health System Sustainability at the Australian Institute of Health Innovation, Macquarie University, and the National Health and Medical Research Council Partnership Centre for Health System Sustainability.

Mary Dahm is a Research Fellow at the Australian Institute of Health Innovation, Macquarie University.

Jeffrey Braithwaite is Professor and Director of the Centre for Healthcare Resilience and Implementation Science at the Australian Institute of Health Innovation, Macquarie University.

The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless that is so stated.