Last month the NEDC National Eating Disorders Framework: An Integrated Reponse to Complexity 2012 was approved by the Department of Health and Ageing. We have a unique opportunity to explore and test these national standards through the medium of the e-bulletin and e-network . This month, we are profiling the implementation principle: Evidence Informed and Evidence Generating Approaches, through an interview with the Deputy Chair of the NEDC, Professor Phillipa Hay.
Q: What is the difference between evidence informed and evidence generating and why are both needed for eating disorders?
PH: Evidence informed practice is based on what is known about what works, with respect to the treatment of eating disorders. Basing clinical practice on scientific evidence is the hallmark of “Western” medicine. Long before the advent of Randomised Controlled Trials (RCT’s) in clinical practice, doctors have been basing their practice on science. Traditionally, this was what differentiated Western medicine from more complementary approaches. But today, even complementary medicine is basing studies on RCT’s, in an effort to keep up with more widely accepted forms of medical practice.
Evidence generating practice is done without hard evidence, but is practice that is continually assessed, evaluated, and reviewed collaboratively with the patient and treatment team, in accordance with the scientist-practitioner model. In clinical practice, this involves, for example, taking measurements before and after treatment with a view to helping inform the state of knowledge about the efficacy of treatments.
Both approaches are needed in the field of eating disorders, because while we do have quite a robust understanding of treatment options for Bulimia Nervosa, and how to establish recovery in a physical sense for Anorexia Nervosa, no one specialist psychotherapy stands out for Anorexia Nervosa. In addition, we have limited understanding of some of the mixed presentations of the eating disorders under Eating Disorder Not Otherwise Specified, for example, Binge Eating Disorder.
Q: How would implementing the principle of evidence informed and evidence generating approaches change the experience of treatment for people who have an eating disorder?
PH: Theoretically, this approach should enhance the outcome for people with an eating disorder as in this context, it creates a milieu where the goal is continual improvement and there is an expectation of either a good outcome or a critical appraisal as to why outcomes were poor.
Clinical data collected throughout treatment can also contribute towards clinical research. However, it is important to conduct any clinical research within treatment with respect and sensitivity, so that patients do not feel that they are merely “data” being used for evaluation. Evidence based practice should always be based on science, but also tailored to an individual’s unique presenting problems and specific treatment goals. Clinicians should be using evidence informed practice where it is available, to ensure that the treatment tools they are using are considered up-to-date and efficacious. In lieu of hard evidence, continuous evaluation of practices is in the spirit of evidence generating approaches.
Q: How are people with a personal experience of an eating disorder involved in evidence informed and evidence generating practices?
PH: A collaborative approach to the treatment of an eating disorder is advocated as best practice, so by this measure, the individual with a personal experience is necessarily involved in both evidence informed and evidence generating approaches, to reduce the burden of illness.
There are a couple of ways that the individual’s personal experience can be used to inform the evidence and practice:
- Involvement in a research project (e.g. clinical trial)
- Active collaboration with the therapeutic team during treatment for practice appraisal and in quality assurance
- Heading their own research into broader based outcomes
Q: Who is responsible for determining the quality of evidence based practice? How do we ensure the safety and appropriateness of these strategies?
PH: There is no one body responsible for oversight of this practice. Quality of assessment and practice is a key feature of professionalism, and there are various quality assurance methodologies used by different sectors (in terms of professions, and public and private domains). For example, the Royal College of Psychiatrists (UK) requires clinicians to complete a quality assurance project during their training.
With respect to ensuring the safety and appropriateness of these strategies, currently we don’t have a good answer to this, as it is much more difficult to determine. The Australian Health Practitioner Regulation Agency (AHPRA) requires practitioners to engage in continuous professional development, but this is not akin to determining the safety and appropriateness of the evidence based practices they use.
In the future, the NEDC could take the lead in facilitating, monitoring and creating a professional environment for evaluating practices. In essence, this would involve providing safe and appropriate tools for practitioners and having oversight for how these tools are used in practice. This would be quite an ambitious undertaking nonetheless.
Q: Fairburn (2005) suggests that the evidence supporting the efficacy of treatments for Anorexia Nervosa is limited. How do we propose to fill these “gaps”? What do we rely on in the meantime?
PH: We need to encourage research across the spectrum, from case studies and clinical trials right through to randomised controlled trials. In the meantime, we practice what we do know works:
- Specialist care for most adults with Anorexia Nervosa, and family-based treatment in adolescents and children
- Treatment within multidisciplinary teams
- Intervening early
We also have a good idea of what doesn’t work:
- Leaving patients alone to get better on their own – eating disorders often become chronic if untreated and less responsive to interventions
Q: Is there scope for a national data collection strategy (from the perspective of the NEDC)?
PH: A national database across clinics in Australia would provide rich data for answering more questions about the effectiveness of treatments in the “real world”. If we could link primary care, hospital and specialist eating disorder databases, we could potentially reduce the gap in the continuum of care.
For example, the Centre for Health Services Research at the University of Western Sydney in collaboration with other institutes is involved with a population health database linking hospital services with Medicare data and private health care. While this approach will still not capture all the information on who is accessing treatment, it does provide an insight into the relevant pathways into care.
A project to set up a national eating disorder specialist database with potential for data linkage would be an ambitious undertaking for the NEDC, but one to consider in the future.
About Phillipa Hay
For more information on this and the ten other principles that make up the National Eating Disorders Framework, please visit our publications page.
For the latest research evidence on eating disorders, please visit the NEDC Clearinghouse.
Join in a discussion of the challenges and benefits of using evidence generating approaches in practice by joining the Clinicians e-Network.
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