The Chronic Abyss and an Electronic Bridge

Michael Gill[1]


Health systems are failing to address the needs of people with serious chronic disease.  The current focus of activity is on acute symptoms but with the rapid rise of chronic conditions the design of the system comes in to question.  Medical science is an on-going positive contribution but the way the health system fails to manage people in need outside and between medical silos is problematic.  For many with medium to severe chronic diseases the choices, the opportunities and the available resources are little more than a dark abyss.

Rheumatoid Disease, often referred to Rheumatoid Arthritis and closely associated with Lupus, lacks adequate understanding and support across both clinical and community spheres.  There are three key issues:

- Clinicians under estimate the impact the disease has on their patients;

- The range of available coordinated support measures is poor; and

- People with serious chronic conditions need tools and services for self-management of care to augment episodic clinic services.

Dragon Claw is a radical initiative that merges patient unmet need with Internet technologies to provide the first set of steps to enable a more comprehensive approach to managing these debilitating diseases.1


Chronic disease affects over 30% of the population worldwide and is growing at 17% per year. It accounts for over 70% of the costs of healthcare in developed economies and is a huge community and personal burden on those with disease.2

In a recent article in the International Journal of Care Coordination it was concluded that barriers to improve care coordination for the chronically ill include: (i) a continued focus on complications management and a failure to integrate risk minimisation and disease prevention along the spectrum of care; (ii) care fragmentation acting as a barrier to better coordination; (iii) a mismatch between intent, at national level, to enhance coordination and integration, and ability at regional or local level to translate these ambitions into practice; and (iv) a lack of structures suitable to promote proactive engagement with patients in the management of their own condition. Knai et al. emphasise cross-disciplinary collaboration and designing patient centric care, and the need for systemic wide support.3

In Australia we have 3.3 million sufferers of general arthritis of which about 450,000 are people with rheumatoid disease (including 5,000 children), which is the most severe form of arthritis involving a life long painful chronic condition associated with very serious health consequences. This represents about 2% of the population with the ratio of males to females being around 1 to 3 and there are over 9,800 yearly admissions to hospital for this condition.4 Anecdotal commentary about drug consumption for patients diagnosed as moderate to severe suggests expenditures range from $50 to $150 per day.

The disease is typified by pain, stiffness, fatigue, organ damage and flu like symptoms that prevent a significant proportion of patients from working full time, if at all. The following quote clearly illustrates the burden from arthritis as experienced by a therapist:

“Now everything has changed - everything. I can't open the shampoo, I have difficulty living my life and doing every day things. I'm in so much pain. I'm an Occupational Therapist by trade - my job is to make OTHER people's lives easier and now my own is becoming harder.” Middle aged female[i].[BV1] 

The health systems throughout health jurisdictions across the globe do not support people with chronic conditions well.  The focus is on patient history, the symptoms and on medications.  While medical science advances over the past decade have been significant, and led to much better management of the disease, little is done for the wider quality of life experience and only a few of the symptoms are really addressed.  This is not to devalue the advances in medical science especially in the development of biologic drugs.  Indeed, these have been wonderful but the criticism here is of how clinical, allied health and other resources are not provided in any planned or systematic manner.

For people with medium to severe chronic conditions the focus is quite simple: - maintaining a quality of life by utilising a range of providers and services in a planned and co-ordinated manner; in other words, patient-centric self-care management.  The problem is that a medically driven approach fails to capture the wider living requirements. Well meaning clinicians operating alone in the community or in medical silos concentrate on areas dictated by their training and generally fail to consider the wider picture.  For example, the development of co-morbidities and the wider aspects of drug-to-drug interaction are often not even discussed with chronic patients.  Furthermore, clinicians will focus only on those symptoms that fit their models leaving the patient to struggle with their other unaddressed symptoms, often without any idea of what to do or where to go.

The Size of the Problem

In 2013 the US based Rheumatoid Patient Foundation released a survey report based on over 1,700 responses.5 Patient groups applauded the survey because it stated what many had suspected for some time.  For example:

  • 80% reported that they sometimes have low- grade fevers, and 99% reported sometimes experiencing Rheumatoid Arthritis related fatigue.
  • On average, respondents experienced only 2 pain-free days per month.
  • A quarter of the respondents stated that joint pain and stiffness lasts all day and night and 52% experienced some or most of their joint pain and stiffness in the evening or after a period of activity.
  • One in three respondents stated that they ‘always’ or ‘usually’ have Rheumatoid Arthritis symptoms that their rheumatologists do not believe.5

This last point in particular indicates gaps in doctor-patient communication and/or gaps in education.6  Most patients expressed the concern that trying to explain the disease is very difficult as outwards physical symptoms are often non-existent.  This survey, standard examination protocol and other anecdotal evidence suggest that the treatment of the disease is focused towards blood chemistry and joint swelling counts.  While reasonable, patient concern remains that not all their symptoms have been examined nor addressed. 

There are few resources or places for the patient to seek reference or support information to validate their own observations.  Constant pain and a lack of sleep means that mental health issues are often evident.  The ability of the patient to construct their position and make an articulate argument is much weaker than it would otherwise be.  Few clinicians and mental health workers take this in to account because they are unaware of the crippling effects this disease can have.

Care management brings these issues in to stark reality.  About 6% of General Practitioners (GPs) in Australia utilize the care management codes developed by the Medical Board of Australia.  This means that very few patients receive a coordinated and planned approach to the management of their disease.  Perhaps the best serviced of the chronic group is Diabetes Type 2 with Rheumatoid Disease running somewhere at the rear of the pack.

Research and disease management literature repeatedly emphasise effective drug management, exercise, diet control and pain management[ii].  [BV2] Patients who rely on their GP or specialist to identify resources and plan a coordinated engagement will be sorely disappointed.  With the median GP consult time of 14 minutes in Australia [iii][BV3] , little wonder why time and effort are in short supply.  How can an episodic care model actually assist people to co-ordinate care providers?  It can’t, so the responsibility needs to move to the person, otherwise referred to in the literature as a people centric approach[iv].[BV4] 

A Possible Solution

There is an urgent need to develop coordinated support arrangements for many chronic diseases and Rheumatoid Disease, in particular.  For this author coordination means the profiling of the person’s needs and then developing a holistic approach that is centered on the patient not the clinical practice. For example, taking the fictitious Mary - she has severe Lupus and is starting to suffer from muscle wastage. Her GP recommends exercise but pain and fatigue limit her enthusiasm. The GP does not tell her where to go or what to look for. She learns from friends and the Internet that muscle wastage is not uncommon and that going to just any gym will not work. Her poor health and muscle state require a physiologist to determine what she can and, importantly, should not do and where a guided exercise program is available. She also learns that the drugs she is taking may also take a toll on her muscles due to vitamin depletion. The question then becomes who will coordinate health resources (as opposed to illness resources) around using a physiologist and amending her diet?

Given that the current system is unable to provide adequate care management, there are spontaneous movements based on Internet services to provide at least a partial answer. In Australian some patients and those who care are proposing a different approach known as Dragon Claw.1

Dragon Claw is a series of software modules available to registered users via the Internet to aid the management of Rheumatoid Disease, Lupus and Juvenile Idiopathic Arthritis.  Dragon Claw is unique and aims to provide information, community and the ability for registered users to coordinate their own care.  The site is designed (when fully built) to minimise the stress and anxiety felt by many carers and patients suffering from Rheumatoid Disease, Lupus and JIA.1

Patients and their carers often go through three distinct stages; crisis and isolation, acceptance and stabilisation and finally living with the condition.  Associated with this is the development of comorbidities, especially those diagnosed with medium to severe conditions. This implies that the progression of the disease intersects with the development of other disease states as time goes by. To help address these issues, Dragon Claw encourages electronic collaboration, provides reference information and allows users to detail their own experiences and make suggestions.  Dragon Claw addresses carer needs, co-morbidities and eventually seeks to assist users build the medical and allied health support they need.  It is hypothesized that these conditions are multidimensional and require management across many subject domains, not just those defined as clinical.  Dragon Claw deliberately links health and fitness features not illness and drug services to provide hope for these incurable conditions.

The site is being built and developed by those with the disease and those who care and is registered as a not-for-profit entity.  Content is provided by the members themselves, from sponsoring journals and by the core build team.  Membership is free as the site is made possible by corporate sponsors and the founder.  Dragon Claw went public in January 2015 with a target membership of 5,000 over the next twelve months and 310,000 within five years[v].


People with a medium to severe chronic disease need support to walk across the abyss.  The costs of physical health care delivery which is mainly acute focused is likely to be prohibitive without major re-engineering.  The use of electronic based tools, especially via the Internet provides a real opportunity to build an electronic bridge across the gap.  While technically simple available Internet tools and services can be effectively orientated away from information delivery and towards service management.

Patient centricity is fundamental as ‘we’ pay and ‘we’ take the risks, not the medical people.  Fundamentally we are talking about health care not illness care.  This is not about building a partnership between patient and clinician as this notion contains elements of equality whereas all health relationships are asymmetrical.  The real data issue is the exchange and sharing of critical information when it is needed across the system, not the storage of all information.  In the context of chronic care, this author details patient centricity as:[BV5] 

  • Coordinating the care providers by the patient or their nominee;
  • The patient owning their data not the clinician;
  • Using the IT tools available to make the patient's journey through the system efficient and convenient;
  • Bringing health care to the home not forcing people to attend distant small rooms where parking is shocking;
  • Encouraging the formation of care teams where appropriate around the patient not around the most senior specialist;
  • Including those that care for the patient in the equation; and
  • Moving the health ‘needle’ towards wellness care not illness care.

For the writing of this paper no specific grant from any funding agency in the public, commercial, or not-for-profit sectors was received.

References[BV6] (Accessed 29 January 2015)

National E-Health Strategy Summary, see (Accessed 29 January 2015)

Knai, C. et al, The underlying challenges of coordination of chronic care across Europe, in International Journal of Care Coordination, September-December 2014 17: 83-92

Australian Institute of Health and Welfare, Bulletin 116, 2013 (accessed 29 January 2015)

Studenic, P., Radner, H., Smolen, J. S. and Aletaha, D. (2012), Discrepancies between patients and physicians in their perceptions of rheumatoid arthritis disease activity. Arthritis & Rheumatism, 64: 2814–2823. doi: 10.1002/art.34543.

[1] Michael was a HISA Board member, Founder of Dragon Claw and has a serious chronic condition.  He has a significant work history across health care jurisdictions as a consultant.

[i] Member quote:

[ii] Trico AC, Antony J, Ivers NM, et al. Effectiveness of quality improvement strategies for coordination of care to reduce use of health care services: a systematic review and meta-analysis. CMAJ 2014;86(15):E568-E578.

Please see:

Powell Davies G, Williams AM, Larsen K, Perkins D, Roland M, Harris MF. Coordinating primary care: an analysis of the outcomes of a systematic review. Med J Aust 2008;21(188(8 Suppl)):S65-68.    

Please see:

[iii] Britt H, Valenti L, Miller G. Debunking the myth that general practice is ‘6 minute medicine’. Byte from BEACH No: 2014;2 Sydney. FMRC, University of Sydney, 2014. (

Please see:

[iv] Stein KV, Stukator Barbazza E, Tello J, Kluge H. Towards people-centred health services delivery: A Framework for Action for the World Health Organization (WHO) European Region. Int J Integ Care 2013;13:e 058.

Please see:

[v] For commentary about the development direction refer to the following interview with the founder published in the on-line magazine Pulse+IT at e

 [BV1]Please add reference.

 [BV2]Please add 2 references. Suggestions:

Trico AC, Antony J, Ivers NM, et al. Effectiveness of quality improvement strategies for coordination of care to reduce use of health care services: a systematic review and meta-analysis. CMAJ 2014;86(15):E568-E578.

Powell Davies G, Williams AM, Larsen K, Perkins D, Roland M, Harris MF. Coordinating primary care: an analysis of the outcomes of a systematic review. Med J Aust 2008;21(188(8 Suppl)):S65-68.

 [BV3]Please add reference. Suggestion:

Britt H, Valenti L, Miller G. Debunking the myth that general practice is ‘6 minute medicine’. Byte from BEACH No: 2014;2 Sydney. FMRC, University of Sydney, 2014. (

 [BV4]Please add reference. Suggestion:

Stein KV, Stukator Barbazza E, Tello J, Kluge H. Towards people-centred health services delivery: A Framework for Action for the World Health Organization (WHO) European Region. Int J Integ Care 2013;13:e 058.

 [BV5]Please add references.

 [BV6]To be adjusted if author agrees with adding the suggested references.