Who Draws the Line Between Health and Illness? A Look Ahead to the 2016 Preventing Overdiagnosis Conference

Oxford University’s Jack O’Sullivan catches up with two co-chairs of the the Preventing Overdiagnosis Conference scientific committee— Alexandra Barratt, Professor of Public Health at the University of Sydney, and Ray Moynihan, Senior Research Fellow from Bond University— to discuss next year’s conference and wider issues surrounding the harms of too much medicine.

 

Jack: What we can expect in Barcelona, the host of the 2016 Preventing Overdiagnosis conference (PODC)?

Alexandra:

Barcelona presents a unique opportunity to broaden the conference’s perspective and exchange ideas about overdiagnosis between English and non-English speaking countries. This is really important, as we know overmedicalisation is an international phenomena.

Ray:

Given the 2016 Preventing Overdiagnosis Conference will occur in a Spanish speaking country, it does open up immediate links to Latin America. In developing nations, where health budgets are constrained more than those in developed nations, the issue of choosing wisely what to spend your money on becomes even more important. There will be a great chance to learn the extent of overdiagnosis in other settings.

 

Jack: Does the Internet play a role in these other settings and countries? What is the Internet’s role in overdiagnosis?

Alexandra:

In the past, in order to get a test you needed to go to a local healthcare provider, that is not the case anymore – you can order online and bypass regulation. This is one of the issues we will be explore at the 2016 Preventing Overdiagnosis Conference. A decade ago, a patient with a strong family history of a disease may present to a clinician, who might order a handful of genetic tests. Now, panels of 50 to 200 genes can be tested, or even whole genome sequencing (22,000 genes). This is now so fast and so cheap, that multiple issues emerge: how do we interpret and use all of this information, how do we store it and re-access this information?

Ray:

Direct to patient marketing has real dangers, no doubt. But, the Internet is also a great tool for disseminating more skeptical and accurate information to help people deal with the onslaught of promotion.

Alexandra:

I think that also highlights the importance of patients in the mitigation of overdiagnosis. A lot of change is going to be driven by patients, as we all increasingly realise that there are risks involved in tests and treatments.

 

Jack: Did the view of patients being integral to mitigating overdiagnosis influence your and the scientific committee’s decision to designate ‘cultural drivers’ a theme for the 2016 conference?

Alexandra:

Yes, we really want to see patient and citizen influence at these conferences expanded. Overdiagnosis is a social problem and the causes are widespread with multiple drivers. Patients and citizens contributing amongst clinicians, policy and academics will be very important to move forward.

Ray:

One caveat to note is the themes we have nominated (widening disease definitions, genomics, economic consequences, ageing, cultural drivers and interventions to mitigate harm) are very important, but we will not be able to definitively investigate and cover all these themes at one conference. These themes will probably be with us for decades, they represent significant challenges to contemporary healthcare systems. They are complex and counterintuitive and there are huge vested interests promoting the problem of medical excess. These themes represent conversations that are going to continue for decades.

 

Jack: ‘Widening disease definitions’ is one of next year’s conferences themes, what can delegates expect in regards to this theme?

Ray:

Two of the plenary sessions will be devoted to debates surrounding controversial issues. One of these sessions will be about expanding disease definitions. We are going to ask a panel, with a range of views, who should be responsible for changing disease definitions and how should that process occur. This is an incredibly relevant issue to everyone; who are the people that draw the line between health and illness? And how do they draw that line? There is evidence suggesting that there are real problems with how that process occurs at the moment and there is a global attempt to reform that process, specifically through the Guidelines International Network (G-I-N). G-I-N now has an overdiagnosis working group that specifically explores how the process of changing disease definitions can become more rigorous. It is also important to note that these conferences are not just about overdiagnosis of cancer. The overdiagnosis of cancer is obviously a big problem and the evidence base is generally more mature with cancer than other non-cancer conditions, but sessions such as these will highlight the issues surrounding non-cancer conditions.

 

Jack: Another theme that is new to next year’s conference is ageing and de-prescribing. What led to the scientific committee’s decision to include this and what can delegates expect?

Ray:

There is a fantastic Geriatrician by the name of Professor David Le Couteur, who writes and researches about pre-dementia. A lot of his time clinically is consumed by ‘un-diagnosis’ and ‘de-prescribing’. He looks at all these labels that are attached to older people and how or if they help them. In consultation with patients and their families, he removes medical labels that do more harm than good. If everything runs as expected, Professor Le Couteur and other clinicians will be running a clinical session about the practical reality, on the wards, of safely undoing medicalization.

Alexandra:

This notion relates to an underpinning theme of next year’s conference: quaternary prevention; minimizing harms for people at risk of overdiagnosis.

Ray:

Quaternary prevention is a new concept that has emerged out of continental Europe and is now very popular in Latin America. It is the idea that protecting people from iatrogenic injury, protecting people from being overmedicalised, is as important as primary and secondary prevention.

 

Jack: It is clear that next year’s conference, similar to its predecessors, will address clinicians, patients and academics. Where will policy makers fit into Barcelona 2016?

Alexandra:

A public government agency will be hosting the 2016 conference (Agency for Health Quality and Assessment of Catalonia). In terms of day-to-day practice, a lot of policy is made by guideline committees, who, as Ray mentioned already through G-I-N, will be represented in Barcelona. Another important resource, which influences day-to-day practice, is the Choosing Wisely campaigns. These recommendations are disseminated throughout many countries and have been represented and contributed at previous conferences and will again be in Barcelona.

 

Jack: What is the eventual goal of the preventing overdiagnosis conferences and its scientific committee?

Alexandra:

We want to have a health system that delivers optimum health outcomes for people, minimizing harms of investigations and treatments. And by doing so, run a healthcare system that is cost-effective and equitable. Lots of testing and treatment is hugely beneficial, but we need to find the right balance and not swamp the system and patients with unnecessary and harmful interventions.

Ray:

We also are still very much focused on getting the science of the problem right. We are still very much trying to work out the nature and the extent of this problem across the healthcare landscape.

 

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Dr. Ray Moynihan is a Senior Research Fellow at the Centre for Research in Evidence-Based Practice at Bond University, Australia and co-chair of the Preventing Overdiagnosis scientific committee

 

 

 

Professor Alexandra Barratt is Professor of Public Health at the University of Sydney, Australia and co-chair of the Preventing Overdiagnosis scientific committee.

 

 

 

Dr. Jack O’Sullivan is a Clarendon Scholar and Doctor of Philosophy student (DPhil) at the University of Oxford.

 

 

 

Featured image credit: Ian Ransley, Flickr