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<article xmlns:xlink="http://www.w3.org/1999/xlink">
  <front>
    <journal-meta />
    <article-meta>
      <title-group>
        <article-title>Patient trajectory visualization for FHIR healthcare data: A use case on melanoma patients</article-title>
      </title-group>
      <contrib-group>
        <contrib contrib-type="author">
          <string-name>Meijie Li</string-name>
          <email>meijie.li@uni-due.de</email>
          <xref ref-type="aff" rid="aff2">2</xref>
        </contrib>
        <contrib contrib-type="author">
          <string-name>Wolfgang Galetzka</string-name>
          <email>wolfgang.galetzka@uk-essen.de</email>
          <xref ref-type="aff" rid="aff1">1</xref>
        </contrib>
        <contrib contrib-type="author">
          <string-name>Bahadir Eryilmaz</string-name>
          <email>bahadir.eryilmaz@uk-essen.de</email>
          <xref ref-type="aff" rid="aff2">2</xref>
        </contrib>
        <contrib contrib-type="author">
          <string-name>Georg Christian Lodde</string-name>
          <email>georg.lodde@uk-essen.de</email>
          <xref ref-type="aff" rid="aff0">0</xref>
        </contrib>
        <contrib contrib-type="author">
          <string-name>Elisabeth Livingstone</string-name>
          <email>elisabeth.livingstone@uk-essen.de</email>
          <xref ref-type="aff" rid="aff0">0</xref>
        </contrib>
        <contrib contrib-type="author">
          <string-name>Jörg Schlötterer</string-name>
          <xref ref-type="aff" rid="aff3">3</xref>
          <xref ref-type="aff" rid="aff4">4</xref>
        </contrib>
        <contrib contrib-type="author">
          <string-name>Christin Seifert</string-name>
          <email>christin.seifert@uni-marburg.de</email>
          <xref ref-type="aff" rid="aff4">4</xref>
        </contrib>
        <aff id="aff0">
          <label>0</label>
          <institution>Department of Dermatology, University Hospital Essen</institution>
          ,
          <addr-line>45147 Essen</addr-line>
          ,
          <country country="DE">Germany</country>
        </aff>
        <aff id="aff1">
          <label>1</label>
          <institution>IMIBE, Unversity Hospital Essen</institution>
          ,
          <addr-line>Hufelandstraße 55, 45147 Essen</addr-line>
          ,
          <country country="DE">Germany</country>
        </aff>
        <aff id="aff2">
          <label>2</label>
          <institution>University of Duisburg-Essen</institution>
          ,
          <addr-line>Forsthausweg 2, 47057 Duisburg</addr-line>
          ,
          <country country="DE">Germany</country>
        </aff>
        <aff id="aff3">
          <label>3</label>
          <institution>University of Mannheim, Area Information Systems</institution>
          ,
          <addr-line>L15 1-6, 68161 Mannheim</addr-line>
          ,
          <country country="DE">Germany</country>
        </aff>
        <aff id="aff4">
          <label>4</label>
          <institution>University of Marburg</institution>
          ,
          <addr-line>Hans-Meerwein-Straße 6, 35032 Marburg</addr-line>
          ,
          <country country="DE">Germany</country>
        </aff>
      </contrib-group>
      <abstract>
        <p>Fast Healthcare Interoperability Resources (FHIR) is gaining popularity as a standard framework for the exchange of electronic health record (EHR) data. Despite the advantages of FHIR, it is dificult for clinicians to understand the data in EHR. To support clinicians in accessing data about a patient, we created a pipeline that extracts, transforms, and visualizes patient data from FHIR. We employ a web-based timeline visualization that shows all clinical data recorded for the patient over their disease trajectory. This can help clinicians to use the patient data more eficiently and to get a clear picture of the patient's disease progress and physical condition more quickly, which could help them to develop the best treatment plan for their patients. The source code with an example synthetic, but realistic patient is available at https://github.com/rtg-wispermed/Patient_trajectory_public.</p>
      </abstract>
      <kwd-group>
        <kwd>eol&gt;Clinical data visualization</kwd>
        <kwd>Electronic Health Records</kwd>
        <kwd>Patient history visualization</kwd>
        <kwd>FHIR</kwd>
      </kwd-group>
    </article-meta>
  </front>
  <body>
    <sec id="sec-1">
      <title>1. Introduction</title>
      <p>tools that i) process FHIR data, ii) select and transform it for the use case at hand, and iii) display
the relevant data in a user-friendly manner.</p>
      <p>
        Visualizations allow users to understand information more efectively, thereby improving
judgment and decision-making performance [
        <xref ref-type="bibr" rid="ref3">3</xref>
        ]. This is also true for healthcare data, where
an eficient display of information is critical for clinicians to understand patient histories [
        <xref ref-type="bibr" rid="ref4">4</xref>
        ].
There has been a significant amount of research work on healthcare data visualization [
        <xref ref-type="bibr" rid="ref5 ref6">5, 6</xref>
        ].
Among them, Cousins and Kahn [
        <xref ref-type="bibr" rid="ref7">7</xref>
        ] first introduced the concept of graphical clinical timelines;
the LifeLines project [
        <xref ref-type="bibr" rid="ref8 ref9">8, 9</xref>
        ] and the Health Timeline project [
        <xref ref-type="bibr" rid="ref4">4</xref>
        ] further developed the idea of
visualizing patient data on the basis of timelines. And in a later evaluation study based on the
Health Timeline project [
        <xref ref-type="bibr" rid="ref10">10</xref>
        ], it was demonstrated that visualizing clinical data chronologically
can efectively help physicians improve their understanding of clinical data and help them
identify complex patterns from the data. Prior work on visualizations mostly focused on the
design of the presentation and graphics of the data visualization and did not support the pipeline
to FHIR encoded EHR data.
      </p>
      <p>In this paper, we present a proof-of-concept for a visualization pipeline that obtains patient
data from EHR in FHIR and apply it to a use case of melanoma patients. In place of the long-term
and complex development of visualization tools, we utilize the publicly available, web-based
charting framework AnyChart2.</p>
    </sec>
    <sec id="sec-2">
      <title>2. Approach</title>
      <p>Our pipeline consists of four steps (cf. Figure 1): i) patient selection, ii) relevance judgment of
attributes by domain experts, iii) extraction of relevant attributes, and iv) visualization.</p>
      <p>First, the patient cohort of interest is selected and exported from the hospital EHR database
based on defined inclusion and exclusion criteria. This export is done using high-level FHIR
APIs, such as FHIR-PYrate3 or fhircrackr 4. The primary stakeholder of our visualization are
clinicians, each with specific information needs about their patients. EHRs contain comprehensive
information about patients, including information that is not relevant for a first assessment. To
identify the relevant information for the visualization, we let clinicians rate the available
information. Clinicians rate each available attribute on a 3-point Likert scale (0: not important,
2https://github.com/AnyChart, last accessed 12.07.2023
3https://github.com/UMEssen/FHIR-PYrate, last accessed 07.06.2023
4https://github.com/POLAR-fhiR/fhircrackr, last accessed 07.06.2023
1: moderately important, 2: very important). We then selected the attributes that at least one
clinician considered very important. In the whole process, domain experts only need to do the
relevance judgment of attributes once for all the patients in one patient cohort.</p>
      <p>The selected attributes are then extracted from FHIR and transformed into a simple
JSON file . First, the resources were flattened, i.e. we changed the nested structure of the
original FHIR resource such that each field in the newly transformed JSON only contains atomic
values to make it easier readable and usable. Secondly, we removed unnecessary and redundant
information based on the patient ID and date. Lastly, in cases where information stems from
the same event but is distributed between multiple resources, the information is merged.</p>
      <p>For the visualization of the extracted attributes as a timeline, we use the AnyChart
JavaScript visualization library2. The AnyChart library provides interactive functionality
designed specifically for temporal data and supports both, time point events (a specific point
in time) and time range events. We map the patient information accordingly, e.g., a physical
examination is encoded as a time point event, and a medication plan with start and end date to
a time range event. AnyChart supports zoom, to adjust the time range showing either a global
view or focusing on a particular time period only.</p>
    </sec>
    <sec id="sec-3">
      <title>3. Use Case: Melanoma Patients</title>
      <p>In this section, we will describe the application of our approach to a specific use case. Due
to the confidentiality of patient data, we use a synthetic, but realistic patient to showcase the
visualization.</p>
      <p>We use the FHIR-based melanoma database from the University Hospital in Essen. As
selection criteria, we used the primary tumor diagnosis to only include melanoma patients:
Condition.category = |C0677930 (Primary Neoplasm) AND Condition.code=
C43.*. Each file contains the complete tumor documentation for a patient and other relevant
information (e.g. laboratory observations and progress notes). Overall, our cohort includes all
possible patients with the start of treatment between 2001 and 2023, with the majority of the
cases being from 2014 to 2023 (about 90%). In total, there are 1899 melanoma patients (46.18%
female, 53.77% male) in the data set. The vast majority is from the North Rhine-Westphalia.</p>
      <p>An example of the relevance judgment of patient attributes is shown in Table 1 (see Appendix A
for the full list). Two experienced dermato-oncologists have rated the attributes based on the
national guidelines for melanoma treatment5. We selected the attributes which at least one
clinician rated as very important for inclusion in the patient trajectory visualization. An example
of JSON output based on these selected attributes can be seen in Appendix B.</p>
      <p>The visualization of the patient trajectory shows general patient information along with the
timeline. Figure 2, top, shows the overview including all attributes selected in the relevance
judgment step. It presents core diagnostic and treatment information for the patient. To further
facilitate clinicians to select the information of interest without being distracted by other
information, we also added a filter function, to show only one special attribute or one special
combination of diferent attributes (cf. Figure 2, bottom).
5http://www.leitlinienprogrammonkologie.de/leitlinien/melanom, last accessed 31.08.2023</p>
    </sec>
    <sec id="sec-4">
      <title>4. Summary</title>
      <p>This work presents a method to visualize FHIR healthcare data as patient trajectory which aims
to support clinicians in accessing information from EHR (available in FHIR) and in obtaining a
comprehensive and concise picture of the patient’s disease progress and physical condition. The
overall framework is extensible and applicable to other patient cohorts and use cases. However
it also has some potential limitations, e.g., relevant attributes might need to be updated due to
the changing of guidelines of treatment and ICD versions, and the choice of web technology,
some browsers may not support JavaScript. An evaluation of the usability, usefulness and
impact of this visualization is planned for future work.</p>
    </sec>
    <sec id="sec-5">
      <title>A. Full List of Relevance Judgments</title>
      <sec id="sec-5-1">
        <title>Time Type (very general: e.g., surgery, best supportive care, radiotherapy)</title>
      </sec>
      <sec id="sec-5-2">
        <title>Patient</title>
        <p>Careplan</p>
      </sec>
      <sec id="sec-5-3">
        <title>Tumour stage</title>
        <p>Pathological TNM staging (pTNM)
Version of pTNM
T, N, M Stage separately (pTNM)
Residual-State (pTNM)
Sentinel Lymph nodes positive (pTNM)
Sentinel Lymph nodes examined (pTNM)
Regional Lymph nodes positive (pTNM)
Regional Lymph nodes examined (pTNM)
Clinical TNM staging (cTNM)
Version of cTNM
T, N, M Stage separately (cTNM)</p>
      </sec>
      <sec id="sec-5-4">
        <title>Oncogenes</title>
        <p>Results of genetic analysis, if genetic findings
frequency and name of the mutation</p>
      </sec>
      <sec id="sec-5-5">
        <title>Progress</title>
        <p>Result of the regular check up (e.g., No tumor
detection, Questionable findings, Progress,
Decline, etc.)
2
2
2
2
2
2
2
2
2
2
1
1
2
1
2
1
1
0
2
1
2
1
1
1
1
2
2</p>
      </sec>
      <sec id="sec-5-6">
        <title>Procedures, Radiotherapy</title>
        <p>Intention (e.g., adjuvant, curative) 2
Status (completed or not) 2
Reason of status 2
B. Example JSON File
1
1
Example data extract from a synthetic, but realistic patient (excerpt due to space constraints)
{
},
"stages": [
},
"patid": "Patient/01",
"dt_record": "2014-02-06",
"cat_examination_type": [
"Laboratory procedure",
"physical exam"
],
"cat_reasons": [
"Initial presentation",
"Treatment planning"
},
...
],
"radiotherapy": [
{
"patid": "Patient/01",
"dt_start": "2016-06",
"dt_end": "2016-06-29",
"cat_intention": [
"palliative",
"adjuvant"
],
"cat_status": "completed",
"cat_reason_end": "regular ending"</p>
        <p>},
...
],
...</p>
      </sec>
    </sec>
  </body>
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