The importance of registries in 4 questions

15 Nov
Kayla Smith

In this AQuAS blog post we’ll continue talking about registries. Last month Jorge Arias focused on registry collaboration between clinics and researchers, and at the beginning of the year we touched on the same topic during interviews with Olga Martínez and Xavier Mora, where the focus was on arthroplasties and new materials used in protheses. A few years ago, in 2015, we celebrated 10 years of the Catalan Arthroplasty Register (RACat), managed and coordinated by the Agency for Health Quality and Assessment of Catalonia (AQuAS). In that post, Olga Martínez and Laia Domingo discussed the experience of the registry as a whole, in terms of history and function.

We’ll start today’s post with the importance of registries.

1. What do we mean by ‘registry’?

A registry is a collection of standardized information that can range from patient diagnoses, outcomes, procedures, diseases, device performance, among other aspects, and uses this data to evaluate specific outcomes for predetermined clinical, scientific, or research purposes.

More concisely, a registry collects standardized information, to be used for a specific purpose, about patients who share a condition or certain characteristics. Patient registries have existed for decades, with the first arthroplasty registries, in the Nordic region, making their debut in the 1970s: the Swedish Hip Arthroplasty and the Swedish Knee Arthroplasty Registers, in 1975 and 1979, respectively, followed by the Finnish Arthroplasty Registry in 1980.

This post will focus specifically on implant registries and their importance at the local, national, and international levels, though other types of registries exist.

2. Why are they important?

Registries are of vital importance for a number of reasons.

In terms of the health sector, since a standardized set of data is collected, a registry enables health professionals and researchers to make systematic comparisons across multiple datasets and traverse geographic locations. Healthcare personnel are kept abreast of other variables that different registries take into account and they can draw conclusions based on the experiences of others. Registries can facilitate professional development while simultaneously bringing clinical practices, outcomes, and possible areas of improvement to light.

With this data, we can highlight best practices, using previous outcomes as a guide, as well as glean important information, quickly, if a need arises for implant recalls.

A brief example focuses on Poly Implant Prothèse (PIP) breast implants, which were made in France from a cheaper, industrial-grade silicone that was not approved for medical use. The implants were rupturing twice as frequently as the industry average and causing health problems in thousands of women.

Following this occurrence, the NHS created and implemented a register, The Breast and Cosmetic Implant Registry (2016), for patients in England with breast and other cosmetic implants that allows them to be traced quickly and efficiently, should any similar safety concerns arise.

3. Strengths and barriers of international registries?

Registries are not only important when keeping track of information at the local or national levels, they are also extremely helpful in an international context as techniques and methods can be easily shared among countries.

However, certain barriers can play a part in international data access. Recent changes in European law, specifically in terms of patient data protection, could have effects on international registries.

According to an expert with the Dutch Arthroplasty Register (LROI), these laws, introduced in May 2018, could be detrimental to registries whose national regulations are flexible and who are now forced to adapt to more rigid regulations.

In terms of the personnel involved in international registries, whether they are stakeholders, policy makers, healthcare professionals, or others, they have to keep abreast of potential barriers resulting from encompassing multiple countries as well as other regulatory aspects at the regional, state, and European levels to ensure correct implementation and functioning of the registry itself.

Experts from two international registries, the Nordic Arthroplasty Register Association (NARA) and the International Collaboration of Breast Registry Activities (ICOBRA), have both stated that multiple countries, and thus multiple jurisdictions, participating in a single registry could prove difficult, given that the registry as a whole is obliged to function using the regulations imposed by the strictest country.

Though there could be a few barriers to international registries, they continue to be a fountain of useful information. They facilitate advancement in knowledge, processes, and data regarding types of implants to use and/or avoid.

4. What can this knowledge do for AQuAS?

Registry implementation, long-term functionality, and best practices are of great importance to AQuAS, who created and is in charge of the RACat, the Catalan Arthroplasty Register.

The RACat currently collects information on hip and knee arthroplasty procedures from 53 out of 61 health centers in the Integrated Healthcare System of Public Healthcare Network of Catalonia (SISCAT), and is on the cusp of including shoulder arthroplasty procedures.

Given the breadth and depth of existing knowledge in the international community, AQuAS, and those involved closely with the RACat, are interested in the information available in terms of best practices for implementation and sustainability, as well as the types of variables that other registries collect.

With the ability to follow in the footsteps of registries that are already well established, AQuAS, the Catalan health system, and the international community as a whole, can improve the care given to their respective populations.

Post written by Kayla Smith.

Preventing overdiagnosis 2018: Three key points to reduce overdiagnosis

8 Nov
Johanna Caro Mendivelso

This year, the annual Preventing Overdiagnosis conference was held in Copenhagen, co-sponsored by the World Health Organisation, where delegates from about 30 countries attended.

The space generated in this conference provides the opportunity to approach the subject of how health professionals, researchers and patients can implement solutions to problems related to overdiagnosis, overtreatment and overuse by using the evidence available.

Overall, some of the subjects discussed were the implementation of recommendations to “stop doing”, the challenge of dealing with excessive diagnosis in clinical visits, the impact of overdiagnosis, the fact of converting citizens into patients and the role of risk factors in excessive diagnosis.

John Brodersen, professor of family medicine at the University of Copenhagen, started the conference by making a reflection on what is and what is not overdiagnosis. In general, overdiagnosis means turning people into patients unnecessarily by identifying problems that were never going to cause harm or by medicalising ordinary life through expanded definitions of diseases. This overdiagnosis can trigger a cascade of excessive treatments.

Later, Iona Heath, general practitioner and member of the Organising Committee of Preventing Overdiagnosis, asked the audience the question Why are we so afraid of normal? She reflected on why doctors are willing to rush into a diagnosis and pointed out that the task of defining “who is normal” is a challenge. Who should define who is normal and with what criteria?

Gisle Roksund, general practitioner in Norway stated that the general tendency in medicine is: “find it as soon as possible and do more”. Similarly, he pointed out that people are being labelled as ill with “pre” conditions when they are not. And he ended off by saying that life itself is a “pre-mortality” condition.

On his part, Paul Glasziou, general practitioner and professor at the Bond University in Australia, presented three key points to reduce overdiagnosis: reducing over-detection, over-definition and medicalisation. Juan Pablo Brito, endocrinologist and researcher at the Mayo Clinic, talked about a new term in his conference on diagnosis centred on the person: Extradiagnosis: when the diagnosis is not appropriate for the biology, context or preferences of a patient. The diagnosis centred on the patient is based on identifying the problem and carrying out actions to find the solution. That is, “reaching a conclusion together which makes intellectual, emotional and practical sense”.

In mental health, Allen Frances, psychiatrist in the United States, highlighted that overdiagnosis in psychiatry could be avoided if general practitioners had more time in their visits to get to know their patients better.

On the other hand, Steven Woloshin and Lisa Schartz, general internists and co-directors of the Center for Medicine and Media at The Dartmouth Institute, explained that some advertising campaigns could broaden the definition of diseases which can lead to an overdiagnosis and a medicalisation of life experiences. These reflections highlight the importance of having regulation related to these campaigns.

Lastly, the Preventing Overdiagnosis is a space which allows for the sharing of experiences, both theoretical and practical, of what is being done in the world with regards overdiagnosis and overtreatment.

From the AQuAS, and in collaboration with health professionals and scientific societies, the Essencial project in Catalonia tries to address these issues by contextualising them in our environment and by trying to implement recommendations that avoid low value practices and in consequence, an overuse.

Post written by Johanna Caro Mendivelso (@jmcaro103).