Submission on Health Research Council's disability research priorities

Submission to Health Research Council on disability research priorities - July 2004.

Last year NZORD expressed concern to the HRC about proposed priorities for disability research. Click here for those comments. This year the HRC’s advisory committee has recommended giving extra “brownie points” to research proposals focusing on social aspects of disability. NZORD submitted a detailed critique of this approach and emphasised that for the vast majority of disabled people and their families, the top priority is to get control of the incidence and severity, to manage pain and symptoms, and allow more independent functioning. We expressed concern that social barriers and community acceptance have taken centre stage in policy when they represent the priority of the minority of disabled people with the most stable and managed impairments.

The Health Research Councils comments and questions are in italics on this page, followed by NZORD's comments.

The Expert Panel for people with disability has advised the Council to adopt the social model of disability to determine research relevance.  Contemporary models of disability distinguish between impairment and disability, and typically view disability as "the disadvantages experienced due to social, economic, political and environmental factors, which restrict or exclude people with impairment from full participation in their communities" (NACHDSS, 1993)1.

According to this definition, disability research would focus primarily on ways to improve the health and wellbeing of this group of people, rather than the prevention of disease and injury, which would be considered biomedical or injury prevention research.  However, the Panel recognises the importance of biomedical research and its potential to benefit future populations. Do you wish to comment on this approach?

It is one thing to make a policy or political decision that priority will be given to social factors in research on disabled people. That may be a valid thing to do if there is seen to be an imbalance in the amount of research directed at those areas, compared to causes, appropriate health interventions, and potential treatments. But it is another thing altogether to make an assumption that social issues are the main issues of concern for disabled people generally. That is clearly not the case.
 
It will be true that social issues are generally a higher priority for those with more stable impairments and higher functioning, especially where adaptive technology and community acceptance have great potential to remove barriers that prevent their engagement in employment and other community activities. This could influence the views of those "more able disabled" who are often the leaders in the disability sector, but there is a risk that their views are biased by their own experience and interests, and not sufficiently aware of the significant needs of very large numbers of other disabled people.
 
Many disabled people have a disability or impairment that is the direct result of a current active disease state, rather than the consequences of some past injury or biological "assault" that is now stable. For many who are disabled by an active health condition, progression of the disease leads to degeneration in their health and a consequent increase in their disability. For them the disability is driven by a health condition, not by social factors. Social factors are likely to be secondary reinforcers of the disability for them, if they have any impact at all.

It is arguable that the total burden of disability in society consists largely of disease driven disability, with only a minority of disability emanating from social barriers. Key examples of primarily disease driven disabilities are Alzheimers, Parkinsons, Motor Neurone Disease, Stroke, Multiple Sclerosis and Muscular Dystrophies. When other less common neurological conditions are added to these more well known ones, the numbers are very significant indeed.

The progressive and frequently life shortening impacts of these disabilities are not acknowledged or addressed by emphasis on a social model approach. That model also has no acknowledgement of the many children why die in infancy or childhood from genetic and metabolic diseases that have severely or profoundly disabled them through their short lives. It ignores the needs of those who live longer lives but with very significant deficits, and who require very close support with activites of daily living. The social model also glosses over the great potential for improved quality of life, and perhaps reduced levels of disability, through earlier and more accurate diagnosis and better medical care to ensure optimum functioning, comfort and achievement.

When other health driven but generally less life threatening disabilities, such as those arising from severe arthritis, chronic pain, severe tinnitus, some respiratory problems and heart conditions, and most forms of mental illness are factored in, it becomes clear that biomedical causes are the major factor for the vast majority of disabled people.
The obvious priority would then be to find some way to treat, manage or cure the disease that is causing the disability so they would be able to get out the door to confront society's barriers.

The suggestion in the social model of an injury or biological assault that is now passed and has left an impairment requiring social acceptance, access and adaptation, as the key priority for disabled people, is simply not sustainable on the basis of numbers of disabled people so affected, though it is clearly true for the minority for whom it is true.
One worrying possibility that arises from this analysis is that the more able disabled who are active in advocating on policy matters, and the many academics in disability studies who also write and comment on such matters, are either unaware of this fuller picture, or chose to ignore a greater reality than that which fits their own needs or interests.

Building a policy priority in disability research on the basis of the social model, cannot be justified on the basis of the needs of the majority of disabled people. The total burden of disability in society, as evidenced by the mortality and morbidity of conditions referred to, would require priority to go to means by which the disability could be alleviated or treated, so the person can achieve rehabilitation or recovery.

These arguments are not to deny the importance of social issues in compounding or reinforcing disability, nor to deny the need for research into these social issues. They are made to get an honest assessment of the basis on which the priority is set, rather than a convoluted or biased justification for it.

Research Priorities
The purpose of setting priorities for research in this area is to ensure that only research that will bring the maximum benefit for people with disability is given priority status, i.e. the priorities should be restricted to the key health and wellbeing issues facing people with disability in New Zealand. 
In your view, what are the key research priorities for people with disability?  Please state the rationale for this research to be considered a priority.

 Based on the analysis given above, NZORD would assert that the key priority should be to seek ways to intervene to improve the health and quality of life of disabled people, so that the impact and burden of disability on individuals, on those who support and care for them, and on society as a whole, is reduced. The areas of intervention should be two-fold:

  1. Ensuring the most appropriate levels of screening, testing, diagnosis and other interventions to prevent disability from occurring, to minimise its impact when it cannot be prevented, to treat what can be treated, and to enable the most appropriate early intervention in all other areas of the person's life, to ensure the best health and quality of life for them and reduced impacts on family and society.
  2. Ensuring the most appropriate application of current advances in genetic knowledge, biotechnology, and other technology in a timely way so that people with disabilities, their families and society, can gain the currently obtainable and future benefits and reduce the individual and collective burden of disability.

These priorities would prevail over research into social aspects of disability, which would be a lower priority. The basis of asserting thse priorities is the following briefly summarised argument:

The social model of disability arose at a time when biomedical knowledge of disability was extremely limited. There was little capacity to intervene to treat or cure, other than in vaccine prevention, and in our society that was implemented quite well. Concentrating on social aspects would not only deal with much neglected issues, but be the only area in which much real progress could be made to enhance the lives of people with disabilities.

The reality is now different. Just at the time the social model is being accepted and implemented in government policy, there is a paradigm shift taking place that makes the social model inadequate, and perhaps even redundant. Redundant perhaps, because much of its stated positions include open rejection of the medical realities of disability, just as those medical aspects are radically changing and creating significant opportunities to intervene to reduce the burden of disability.

A new model is needed for disability - one that integrates both the medical and the social aspects, treats the person holistically, and includes family and societal interests. Advances in medical possibilities should be blended with our more sophisticated social understanding and determination to make rapid progress in improving health and quality of life of disabled people. They are the pre-requisites in most cases for inclusion in society.

Applying the new model (and research priorities that should go with it):

  1. Practical application of this can already occur in confirming diagnosis and reviewing health care for many disabled people (based on new diagnostic techniques, medical care advances, and evidence from reviews of the health care of groups of disabled people) for whom these things are not well established now. But work is needed to apply them.
  2. It can be applied now in expanded newborn screening to ensure avoidance of disability or death from some metabolic diseases. There is also great potential for newborn screening of many more conditions with a significant improvement in health and disability outcomes for many more babies, as well as rapidly informing parents of a genetic risk in future pregnancies. But work and commitment is required to implement this.
  3. Newborn hearing screening can be implemented to maximise intervention and learning opportunities in those with undiagnosed hearing impairments, with the likely bonus of reducing future social maladjustment that seems common in those with late diagnosed hearing problems. But there needs to be a will to do this.
  4. The new model can be applied now by setting up natural history studies of many of the rarer disorders with progressive disabling impacts, and sharing that information with researchers internationally to develop best treatment protocols. (This has been done informally by many families, including NZ families, with some remarkable outcomes for improvements in health and quality of life, and important information gained to prevent adverse outcomes for others). But commitment and energy are needed to enhance these tentative steps.
  5. Development of patient registries would significantly advance knowledge gain and collaboration with researchers working on new treatments or diagnostic techniques, facilitate the inclusion of New Zealand people in clinical trials, and speed the introduction of treatments and interventions when they become available - all to the advantage of a very large number of disabled people.
  6. Promoting and enhancing networks among support groups for particular conditions can improve access to information by affected individuals and families, improving their confidence in management of their situation, and improve opportunities for collaboration with researchers interested in the condition.
  7. Ideally, policy would recognise the need for focussed support of biomedical research specifically related to disability, that is currently doing so much, and could do so more, to improve the outcomes for disabled people. It needs to be seen as applicable to many people currently alive, not just future generations. This is a part of the paradigm shift, but it needs commitment and work on it.
  8. Forward looking work could seek to identify areas of innovation in diagnosis, care and treatment, and prepare our systems to ensure disabled people can get timely application of them.

These examples are given in the hope that New Zealand might take a position that seeks to capture gains and maximise their benefit for disabled people, their families and society, rather than appear to be slow, even reluctant, to translate benefits to it disability sector. The potential tragedy is that the narrow approach of the social model will continue to inappropriately dominate for the usual policy cycle and we still work to it for about another generation to come.

Should research involve people with disability as participants to be considered a priority?

Not necessarily. Good quality research proposals aimed at achieving benefits to people with disabilities, should be considered a priority. If participation of disabled people is necessary or desirable for the research outcomes, then that should obviously be a pre-requisite. But it could be a significant mistake to confuse process or methodology with purpose.

In theory, research that does not involve disabled people, if it is the right proposal, could have more potential benefit that any proposal that does involve them. However unlikely this is, and the probability that good disability research will involve disabled people, the principle priority should be to get good research projects under way, and get good outcomes, without impositions as to process or  methodology. Proposals should stand or fall on their merits.

Should consultation with representatives or stakeholder groups be considered a criterion for determining the relevance of research to people with disability?

Yes, definitely. Whatever the range of views among disabilty sector stakeholders, there is likey to be a unanimous view that we should be involved in consultation on research proposals to influence their purpose and help improve their relevance to us. In any event, consdultation is such an accepted part of all processes now, it would be unthinkable to not have it, wouldn't it? The range of views might be difficult to include and reconcile though.
 
The Expert Panel also considers research of relevance to the New Zealand Disability Strategy to be a priority.  Are there any other strategies that should be formally considered when developing research priorities for people with disability?

The Child Health strategy is an important one as so many disabilities appear in the early years. It is also more pragmatic and less idelogical than the Disability Strategy, and should be carefully considered by the Expert Panel.

In addition, the background discussion on the social model of disability, and in particular the examples given in the research priority section of this submission are very relevant to the Child Health strategy.

John Forman
Executive Director