Augmented care: An alternative model of care for people with chronic disease

Introduction

This paper is not written by a condition, not by a patient, not by an illness but by a human with a chronic disease. The term ‘patient’ is in many ways objectionable as it dehumanises and promotes passivity. The patient is being ‘done to’ but most people tend to collaborate in order to achieve a goal. The goal for people with chronic disease is to be functional; to sustain quality of life and to participate in what life has to offer.^1,2

The problem is that the management of wellness and illness for the chronically ill just does not happen commonly, systematically or as a matter of normal operation as the current health system operates via an acute paradigm. Team care arrangements for general practitioner’s (GP) and allied health providers are available but few actually prosecute these plans to completion. ³ Allied health providers are a group of health professionals working to prevent disease transmission, diagnose, treat and rehabilitate people and include, for example, physiologists, podiatrists and psychologists. Wellness and illness are considered separately with the medical fraternity and their associated jurisdictions concentrating heavily upon managing the symptoms whereas wellness is given little prominence. The Self Care Continuum illustrates this (Figure 1). ⁴ OPEN IN VIEWER

I suggest that a person with a chronic disease has to build and reinforce what wellness they have (far left of the diagram in Figure 1) in order to manage the debilitating aspects of their disease more effectively. Without this approach they end up being ‘medical patients’ having only their symptoms prosecuted often in complete isolation of what is needed for a better life. For example, the contribution of medical science through drug therapies offers significant functional improvements. As a case example, the biologics used for rheumatoid arthritis such as tocilizumab have been singularly successful. I am not suggesting an either/or position but one where some form of partnership and increases in health literacy operate positively to the benefit of both parties. The importance of partnership and communication between consumers and health professionals must therefore be underlined and emphasised in any drive for self-care. ⁵

Augmented wellness

The role and position of the specialist are fundamental. I have no issue with their expertise or motivation. The time pressures on these individuals mean that their ‘patients’ only access them when in a crisis or for symptom monitoring. Their ‘patients’ are in most cases left to get well and/or to manage the illness–wellness balance outside the consulting room irrespective of their capabilities to do so, with or without the assistance from their GPs. The GP is also put in a position of examining peripheral symptoms like pain and depression and not coordinating a wider care plan because of the excessive administration required.

Terms like ‘case management’, ‘patient co-management’, ‘care coordination’ and ‘integrated care model’ are often used in the literature.^6,7 Some initiatives are indeed successful in improving the quality of life for the individual concerned with examples from diabetes, hypertension and breast cancer management as stand out examples. Physicians from an 11-country survey reported that use of such teams is wide spread in most of the countries surveyed but Italy was the only country where a majority of doctors reported routinely giving patients written instructions on how to manage their care at home. ⁸ It was unclear if the survey also considered the use of allied health.

The expansion of an approach focusing on wellness and self-care is both costly and practically unlikely as a national response to improving the system of care, given the current jurisdictional and institutional structures in many countries, including Australia. Within this environment health insurance companies, private companies and certain health-managed geographies have stepped in and realized that a greater play of resources in making the chronic disease ‘patient’ well and getting them back to work is indeed a much more cost effective approach. Examples from Australia include Bupa Health Insurance using diet consultants to telephone selected members with severe conditions over an 18-week period and assisting them to improve eating habits. Another includes Queensland Health, southern region, using telephone councilors to improve life style factors via a program called ‘+Impact’. Yet another is the Precedence Health Care project CDM-Net: A Broadband Health Network for Transforming Chronic Disease Management, conducted in Barwon South Western Region of Victoria and Eastern Goldfields Region of Western Australia.

While these approaches extend the reach and impact of managed health care, the patient is effectively disenfranchised. In the end, the person seeking illness care bears the costs, lives with the pain and carries the consequences – not the clinician and not the system. When they are treated as patients, when they are limited to being ‘done to’ they are prevented from taking control of their own disease. They are, in effect, disenfranchised.

AugmentedCare = Wellness + Illness

I postulate that augmented care is an equation that considers wellness and quality of life to be equal in focus to the treatment and management of illness. Both are essential to improving life style for the chronically ill. The enabling characteristics include:

The ill person being encouraged to take ownership and control for managing their chronic condition, the clinical data and the administrative processes;

The examples listed above are moving in the direction of augmented care but still place the clinician is at the centre, not the ill person. None of the above points are particularly radical and have been discussed, mostly separately, by different authors.^9,10 What may be radical is integrating all the above in to a single response and organising service around the person.

Organising wellness and illness care around the person promotes self-help. It also makes it possible to include the primary caregiver. This is an area often ignored. People with serious chronic disease require detailed support from their partner, relative or friend over an extended period of time particularly during periods of crisis. The role of the caregiver is vital as they represent an in-house coach, educator, counsellor and helper. I suggest that where the carers are deliberately included in the execution of a care plan, optimal medication management and wellness outcomes are more evident.

Augmented care relies upon allied health providers as the main providers of regular support services. These individuals take a much more dominant role in providing wellness services. The success factors relate to the avoidance of hospital admission when the condition exhibits acute characteristics, for example, rheumatoid arthritis chest pain resulting in unnecessary admission.

Augmented care requires the provision of smartphone and online tools. The broad areas addressed include medication management, events calendar, self-observation records, selected medical literacy improvements, and tools for crisis alert, nutrition improvement, online mental health assessments and exercise.

The health system and its institutions and interest groups are a given in all jurisdictions. While many resources exist and are often available, few are easy to find and interact with. I believe that a nurse/navigator is a very worthwhile addition to augmented care operation.

Conclusion

Augmented care is about maximising wellness and focuses the self-care continuum towards patient centricity. It is ideally suited to online service delivery combined with more conventional methods. Augmented care is a break away from simple monitoring symptoms towards encouraging and equipping the person to manage their own condition most of the time. Augmented care is about supporting the wellness side of the equation and then linking this to living successfully with the chronic condition. ¹