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6 changes: 3 additions & 3 deletions vignettes/osdc.Rmd
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Expand Up @@ -26,7 +26,7 @@ This package serves two overarching purposes:
To read up on the overall design of this package as well as on the
algorithm, check out the `vignette("design")`. For more explanation on
the motivations, rationale, and needs for this algorithm and package,
check out the `vignette("explanation")`.
check out the `vignette("rationale")`.

## Usage

Expand All @@ -38,8 +38,8 @@ library(osdc)
```

The core of this package depends on the list of variables within
different registers that are needed in order to classify the
diabetes status of an individual. This can be found in the dataset:
different registers that are needed in order to classify the diabetes
status of an individual. This can be found in the dataset:

```{r}
variable_description
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128 changes: 128 additions & 0 deletions vignettes/rationale.Rmd
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---
title: "Rationale"
output: rmarkdown::html_vignette
bibliography: references.bib
csl: vancouver.csl
vignette: >
%\VignetteIndexEntry{Rationale}
%\VignetteEngine{knitr::rmarkdown}
%\VignetteEncoding{UTF-8}
---

This document explains the rationale behind the development of this
algorithm. Many of these text were taken from Anders Aasted Isaksen's
[PhD Thesis](https://aastedet.github.io/dissertation/) as well as the
validation paper [@Isaksen2023]. This document is a shorter and more
concise version of those documents. We cover the:

- Current state of how diabetes is identified in Danish healthcare
registers.
- Challenges faced by researchers in this area, such as the limited
transparency in how diabetes is exactly classified in these sources
and how applying or using these approaches isn't very easy.
- How this algorithm and package contributes to discussions in this
space about how diabetes in classified in Danish register research
and how it is implemented.

## Identifying type 1 and 2 diabetes cases in Danish healthcare registers

### Danish register data infrastructure

Many individual-level data (e.g. civil registration, public healthcare
contacts, and drug prescriptions) are automatically collected on all
residents in Denmark and stored in nationwide Danish registers by
[Statistics Denmark](https://www.dst.dk/da/) and the [Danish Health Data
Authority](https://sundhedsdatastyrelsen.dk/da). These agencies are
legally allowed to give access to the register data for research
purposes, which provides (authorized) researchers a set of common,
extensive data sources to use for studies. Any researcher associated
with an approved Danish research institute (mainly Danish universities)
can apply for access, but fees and conditions apply.

Register data is generally accessed and processed by approved
researchers on remote servers operated by Statistics Denmark and the
Danish Health Data Authority. The same raw data used by all
researchers, coupled with a common virtual working environment,
has the potential to enable reproducible research. This means that
any data processing workflow
could be transferable and reusable between research projects if the
underlying code is designed with reproducibility in mind and the code is
shared ("open-sourced") [@Marszalek2016]. While reproducibility in
research relates to transparent reporting of methods to enable others to
reproduce analyses and experiments, this also applies to a diabetes
classification program, which - if reproducible - could be reused by any
researcher with access to the necessary register data to dynamically
identify a study population of individuals with diabetes for their
research needs [@Dima2017].

### Current Danish register-based diabetes classifiers

In Denmark, the National Diabetes Register, established in 2006, was the first resource readily
available to researchers to use for identifying diabetes cases through register data [@Carstensen2011] .
However, it was discontinued in 2012.

The next resource is the [Register of Selected Chronic Diseases](https://www.esundhed.dk/Dokumentation/DocumentationExtended?id=29) (RSCD),
which was launched in 2014. It is currently the only publicly available
resource to identify diabetes cases through Danish register data (by
application to the Danish Health Data Authority).

## Challenges in current classifiers

General-purpose registers and other administrative databases often
provide the basis of diabetes epidemiology, but they rarely contain
validated diabetes-specific data, which may introduce bias in studies
using this data. It is important to have an accurate tool to identify
individuals with diabetes in the registers, as findings may differ with
various diabetes definitions [@Nielsen2014; @Rawshani2014]. Considerable
efforts have been made towards establishing such a tool for diabetes
research in several countries, including Denmark [@Bak2021;
@HallgrenElfgren2016; @Cooper2013].

In a general population, classification algorithms (classifiers) need to
not only identify type 1 diabetes as well as type 2 diabetes, but also
account for events that might lead to inclusion of non-cases, such as
the use of glucose-lowering drugs in the treatment of other conditions.
Currently, no type-specific diabetes classifier has been validated in a
general population, which leaves register-based studies in this area
vulnerable to biases.

In Denmark, a limitation (or flaw) of the RSCD is that it has not been
publicly validated and the source code behind the algorithm has not been
made publicly available. Notably, the algorithm lacks inclusion based on
elevated HbA1c levels [@DHDA2016]. Likewise, the National Diabetes
Register, since discontinued in 2012, had a validation study question
its validity and called for future registers to adopt inclusion based on
elevated HbA1c levels [@Green2014].

Since the launch of the RSCD, nationwide laboratory data on HbA1c
testing has become available in the Danish register ecosystem
[@DHDA2018], but this data is yet to be incorporated into available
diabetes classifiers.

## Diabetes classification algorithms

The currently available register-based diabetes classifiers have yet to
incorporate the emerging register data on routine HbA1c testing. Wishing
to take advantage of this data, we developed the Open Source Diabetes
Classifier (OSDC). Detailed discussion of the advantages and
disadvantages of it's design is found in Anders Aasted Isaksen's thesis,
in the chapter on [discussing the
methods](https://aastedet.github.io/dissertation/5-discussion-methods.html).

We aimed on developing this algorithm to:

1. Stimulate discussion within Denmark on the openness and ease of use
of existing classifiers or diabetes registers, and on the need for
an official process for updating or contributing to existing data
sources on diabetes status. This algorithm and package may end up
not being used by official institutions, but it can serve as a
starting point on how to improve the current state of diabetes
classification in Denmark or as an inspiration for how they might be
designed.
2. Provide an open-source, code-based algorithm as an R package to
classify type 1 and type 2 diabetes based on data from Danish
registers. We implemented it as an R package so that researchers can
easily build their own database of individuals with diabetes more
quickly than waiting for an official source to be implemented.

## References
135 changes: 135 additions & 0 deletions vignettes/references.bib
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Expand Up @@ -11,4 +11,139 @@ @Article{Isaksen2023
publisher = {Informa UK Limited},
}

@Article{Marszalek2016,
author = {Marszalek, Rafal T. and Flintoft, Louisa},
journal = {Genome Biology},
title = {Being open: our policy on source code},
year = {2016},
issn = {1474-760X},
number = {1},
pages = {172},
volume = {17},
doi = {10.1186/s13059-016-1040-y},
type = {Journal Article},
}

@Article{Dima2017,
author = {Dima, A. L. and Dediu, D.},
journal = {PLoS One},
title = {Computation of adherence to medication and visualization of medication histories in R with AdhereR: Towards transparent and reproducible use of electronic healthcare data},
year = {2017},
issn = {1932-6203},
number = {4},
pages = {e0174426},
volume = {12},
doi = {10.1371/journal.pone.0174426},
type = {Journal Article},
}

@Article{Nielsen2014,
author = {Nielsen, A. A. and Christensen, H. and Lund, E. D. and Christensen, C. and Brandslund, I. and Green, A.},
journal = {Dan Med J},
title = {Diabetes mortality differs between registers due to various disease definitions},
year = {2014},
issn = {2245-1919},
number = {5},
pages = {A4840},
volume = {61},
type = {Journal Article},
}

@Article{Rawshani2014,
author = {Rawshani, A. and Landin-Olsson, M. and Svensson, A. M. and Nyström, L. and Arnqvist, H. J. and Bolinder, J. and Gudbjörnsdottir, S.},
journal = {Diabetologia},
title = {The incidence of diabetes among 0-34 year olds in Sweden: new data and better methods},
year = {2014},
issn = {0012-186X (Print)
0012-186x},
number = {7},
pages = {1375-81},
volume = {57},
doi = {10.1007/s00125-014-3225-9},
type = {Journal Article},
}

@Article{Bak2021,
author = {Bak, Jessica C. G. and Serné, Erik H. and Kramer, Mark H. H. and Nieuwdorp, Max and Verheugt, Carianne L.},
journal = {Acta Diabetologica},
title = {National diabetes registries: do they make a difference?},
year = {2021},
issn = {1432-5233},
number = {3},
pages = {267-278},
volume = {58},
doi = {10.1007/s00592-020-01576-8},
type = {Journal Article},
}

@Article{HallgrenElfgren2016,
author = {Hallgren Elfgren, Ing-Marie and Grodzinsky, Ewa and Törnvall, Eva},
journal = {Primary Health Care Research & Development},
title = {The Swedish National Diabetes Register in clinical practice and evaluation in primary health care},
year = {2016},
issn = {1463-4236},
number = {6},
pages = {549-558},
volume = {17},
doi = {10.1017/S1463423616000098},
type = {Journal Article},
url = {https://www.cambridge.org/core/article/swedish-national-diabetes-register-in-clinical-practice-and-evaluation-in-primary-health-care/F3A9B74FED1E7B36147FF63382939B9A},
}

@Article{Cooper2013,
author = {Cooper, John G. and Thue, Geir and Claudi, Tor and Løvaas, Karianne and Carlsen, Siri and Sandberg, Sverre},
journal = {Norsk Epidemiologi},
title = {The Norwegian Diabetes Register for Adults – an overview of the first years},
year = {2013},
number = {1},
volume = {23},
doi = {10.5324/nje.v23i1.1599},
type = {Journal Article},
url = {https://www.ntnu.no/ojs/index.php/norepid/article/view/1599},
}



@Article{Carstensen2011,
author = {Carstensen, B. and Kristensen, J. K. and Marcussen, M. M. and Borch-Johnsen, K.},
journal = {Scand J Public Health},
title = {The National Diabetes Register},
year = {2011},
issn = {1403-4948},
number = {7 Suppl},
pages = {58-61},
volume = {39},
doi = {10.1177/1403494811404278},
type = {Journal Article},
}

@Article{Green2014,
author = {Green, Anders and Sortsø, Camilla and Jensen, Peter Bjødstrup and Emneus, Martha},
journal = {Clinical epidemiology},
title = {Validation of the Danish National Diabetes Register},
year = {2014},
issn = {1179-1349},
pages = {5-15},
volume = {7},
doi = {10.2147/CLEP.S72768},
type = {Journal Article},
url = {https://www.ncbi.nlm.nih.gov/pubmed/25565889
https://www.ncbi.nlm.nih.gov/pmc/PMC4274151/},
}

@Misc{DHDA2016,
author = {{Danish Health Data Authority}},
title = {{Algoritmer for udvalgte kroniske sygdomme og svære psykiske lidelser [English: Algorithms for selected chronic diseases and serious mental illnesses]}},
year = {2016},
url = {https://www.esundhed.dk/-/media/Files/Publikationer/Emner/Operationer-og-diagnoser/Udvalgte-kroniske-sygdomme-svaere-psykiske-lidelser/Algoritmer-for-Udvalgte-Kroniske-Sygdomme-og-svre-psykiske-lidelser.ashx},
}

@Misc{DHDA2018,
author = {{Danish Health Data Authority}},
title = {{Dokumentation af Laboratoriedatabasens Forskertabel – Version 1.3 [English: Documentation on Register of Laboratory Results for Research - version 1.3]}},
year = {2018},
url = {https://sundhedsdatastyrelsen.dk/-/media/sds/filer/registre-og-services/nationale-sundhedsregistre/doedsaarsager-og-biologisk-materiale/laboratoriedatabasen/dokumentation-af-labdatabasens-forskertabel.pdf},
}


@Comment{jabref-meta: databaseType:bibtex;}

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