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Implementation Report

Hjernetegn.dk—The Danish Central Nervous System Tumor
Awareness Initiative Digital Decision Support Tool: Design and
Implementation Report
Kathrine Synne Weile1,2, MD; René Mathiasen3,4, MD, PhD; Jeanette Falck Winther2,5, MD, DMSc; Henrik Hasle1,2,
MD, PhD; Louise Tram Henriksen1,2, MD, PhD
1

Department of Pediatric and Adolescent Medicine, Aarhus University Hospital, Aarhus, Denmark2

Department of Clinical Medicine, Faculty of Health, Aarhus University, Aarhus, Denmark3

Department of Pediatric and Adolescent Medicine, Copenhagen University Hospital, Copenhagen, Denmark4

Department of Clinical Medicine, Faculty of Medicine, University of Copenhagen, Copenhagen, Denmark

5

Danish Cancer Institute, Danish Cancer Society, Copenhagen, Denmark

Corresponding Author:
Kathrine Synne Weile, MD
Department of Pediatric and Adolescent Medicine
Aarhus University Hospital
Palle Juul-Jensens Boulevard 99
Aarhus, 8200
Denmark
Phone: 45 2927 9265
Email: kathrineweile@clin.au.dk

Abstract
Background: Childhood tumors in the central nervous system (CNS) have longer diagnostic delays than other pediatric tumors.
Vague presenting symptoms pose a challenge in the diagnostic process; it has been indicated that patients and parents may behesitant to seek help, and health care professionals (HCPs) may lack awareness and knowledge about clinical presentation. To
raise awareness among HCPs, the Danish CNS tumor awareness initiative hjernetegn.dk was launched.
Objective: This study aims to present the learnings from designing and implementing a decision support tool for HCPs to reduce
diagnostic delay in childhood CNS tumors. The aims also include decisions regarding strategies for dissemination and use ofsocial media, and an evaluation of the digital impact 6 months after launch.
Methods: The phases of developing and implementing the tool include participatory co-creation workshops, designing thewebsite and digital platforms, and implementing a press and media strategy. The digital impact of hjernetegn.dk was evaluatedthrough website analytics and social media engagement.
Implementation (Results): hjernetegn.dk was launched in August 2023. The results after 6 months exceeded key performanceindicators. The analysis showed a high number of website visitors and engagement, with a plateau reached 3 months after the
initial launch. The LinkedIn campaign and Google Search strategy also generated a high number of impressions and clicks.
Conclusions: The findings suggest that the initiative has been successfully integrated, raising awareness and providing a valuable
tool for HCPs in diagnosing childhood CNS tumors. The study highlights the importance of interdisciplinary collaboration,
co-creation, and ongoing community management, as well as broad dissemination strategies when introducing a digital support
tool.
(JMIR Med Inform 2024;12:e58886) doi: 10.2196/58886
KEYWORDS
digital health initiative; digital health initiatives; clinical decision support; decision support; decision support system; decision
support systems; decision support tool; decision support tools; diagnostic delay; awareness initiative; pediatric neurology; pediatricneurology; pediatric CNS tumors; CNS tumor; CNS tumour; CNS tumours; co-creation; health systems and services;
communication; central nervous system
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Introduction
Aim and Context
Primary tumors of the central nervous system (CNS) are thesecond most prevalent childhood cancer, constituting
approximately 20% of all cases [1,2]. The 5-year survival has
risen to 75% [3], but survivors face severe late effects [4]. In
Denmark, approximately 50 patients younger than 18 years are
diagnosed every year [3]. Early diagnosis is crucial for thequality of life of survivors, and early detection and diagnostic
delay have been in focus for decades [5-7]. The presenting
symptoms at the time of onset can be vague, adding difficulty
to diagnostics [8]. Time from first symptom to diagnosis canbe divided into intervals, with the potential to identify inequities
in the diagnostic process [9]. The total diagnostic interval (TDI)
is the sum of the patient interval (PI) and the diagnostic interval[DI] PI: the time from symptom onset to first contact to a healthcare professional (HCP). DI: time from first contact to an HCP
to diagnosis. Intervals are shown in Figure 1).

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Over the past decade, research has reported TDI ranging from28 to 123 days [10-26]. Recent studies indicate a knowledge
gap in HCPs, causing a delay in the DI, and advocate forinterventions specifically aimed toward HCPs to reduce the DI[27-29]. To map the trajectory for Danish patients, aquestionnaire study was undertaken in 2022. The results showed
an elongated median TDI of 106 days, with DI providing thelarger part of the delay, thus displaying that challenging
diagnostic processes are present in Denmark too. The results indetail have been reported separately [30].
In 2017, The Danish Collaborative Comprehensive Childhood
CNS Tumor Consortium (5C) was established, providing along-term strategic research platform, to accelerate diagnostics
and reduce late effects specifically in patients with CNS tumors[31]. The decision was made to create a Danish childhood CNS
tumor awareness initiative, with the aim of reducing diagnostic
delay. hjernetegn.dk was launched after 4 years of preparation.
Figure 2 shows the phases of progression from 2020 onward.

Figure 1. The diagnostic route: visualization of diagnostic intervals. HCP: health care professional.

Figure 2. Workflow creating hjernetegn.dk. The initiative was launched on August 21, 2023. The evaluation of the digital impact was initiated in
February 2024, 6 months after launch. SoMe: social media.

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Similar Interventions
Efforts to accelerate timely diagnosis to enhance survival andthe quality of life after cancer are advocated for worldwide.
Childhood cancer has been a World Health Organization priority
since 2018 [32]. In the United Kingdom, the HeadSmart
campaign was initiated in 2011; actively reducing the time fromsymptom onset to diagnosis by several weeks, with a reductionin the time from onset until families approached a HCP, as wellas an accelerated referral within the primary and secondary
sector [18,33,34]. The HeadSmart initiative was set up as anationwide public campaign, creating awareness in the public
and among HCPs on alarm symptoms of CNS tumors inchildren.
Different organization of, and access to, the health care system
may influence the differences in delay between countries. For
hjernetegn.dk, we found inspiration in the methods of the
HeadSmart campaign, but the Danish medical culture and healthcare organization, as well as being in an era of digitization,required designing a novel approach for the Danish initiative
including constricting our target audience to HCPs.
The implementation is reported in accordance with iCHECK-DH(Guidelines for the Reporting on Digital Health Implementation)[35].

Methods
We report the approach and implementation of the Danish CNS
tumor initiative hjernetegn.dk, a tool to support the diagnostic
process of childhood CNS tumors in the interface between
primary and secondary care.

TargetHCPs targeted for the initiative and tool were determined basedon their involvement in clinical diagnostics, thus covering all
HCPs who would first assess a child presenting with complaints
that might be caused by a CNS tumor. Primary targets weregeneral practitioners (GPs), ophthalmologists, and pediatricians.
Secondary targets were nurse practitioners; neurologists;
psychiatrists; ear, nose, and throat doctors; optometrists; childphysiotherapists; and chiropractors.
We approached all specialists with a vested interest incontributing to the content and guidelines provided. We also
included associations from specialties identified as recipients,
involving them in the early process. National health authorities
were informed prior to launch, timely enough for them to beable to respond but not with the intent to consult. Patientassociations and advocacy groups were informed as well.

Participating Entities
Setting up hjernetegn.dk required interdisciplinary experts,
covering academic and clinical knowledge, communication
strategy skills, and digital know-how. A qualified team ofpediatric oncologists formulated the idea, nested within the 5C,
and then included the Danish Cancer Society and the Danish

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Weile et alChildhood Cancer Foundation in the collaboration to support
the commercial and communications strategical part of theinitiative.

Hjernetegn.dk: Web Use, Website, and Social MediaWe invited specialists from the primary target groups toparticipate in a co-creation workshop, encouraging “acollaborative approach of creative problem solving between
stakeholders” [36]. The approach was set up to create a user
journey map to identify the workflow in general practice andpediatric clinics, and to define what would be required in content
and design to make the decision support tool feasible andsuccessful.
The established key points were carried into the process ofdefining which platforms to make our tool accessible. In a
postpandemic online era, printed material is obsolete in a Danish
setting. To enable timely updated content, online platforms wereused: a website as a nest for the tool and social media (SoMe)
platforms to nest the outreach and network. We chose LinkedIn
as the platform for SoME outreach based on its profile as aprofessional community for audience augmentation, with analgorithm that enables outreach by profession, favoring
peer-to-peer communication [37]. Furthermore, funds wereallocated to develop a LinkedIn campaign and ads on Google
Search.

Blueprint Summary: Hjernetegn.dk
The hjernetegn.dk website offers a list of alarm symptoms that
require assessment to rule out a CNS tumor; a checklist for
examination, listing what to include in the primary assessment;
and finally, a decision support tool, offering a hands-on
algorithm to decide whether to approach with watchful waiting,reevaluate within a certain timeframe, or refer directly for further
evaluation including neuroimaging.
Content was provided by pediatric oncologists in collaboration
with stakeholders from relevant specialties. Using national
Danish guidelines and the National Institute of Health and Care
Excellence–accredited Brain Pathways guideline [38] from the
HeadSmart initiative as a backbone, website material applicable
to a Danish setting was developed for the digital era, framing
dissemination in a primarily digital strategy.
An example of the assessment tool is shown in Figures 3-5.
Figure 3 displays alarm symptoms, Figure 4 displays points for
examination and assessment, and Figure 5 displays the decision
support tool.
A communications bureau provided design and graphicalsolutions.
The design accommodated the reported timeframe from theco-creation, allowing only 1 minute to unravel the algorithm.
The aim was to facilitate an overview and to promote awarenessof other symptoms to consider while using the tool for a specificassessment.

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Figure 3. Alarm symptoms on hjernetegn.dk. CNS: central nervous system.

Figure 4. Examination and assessment on hjernetegn.dk. CNS: central nervous system.

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Figure 5. Support tool on hjernetegn.dk. CNS: central nervous system.

Press/Media and Digital Strategy
The press/media strategy aimed to create awareness as well as
drive users to the website when launched. Interviews were set
up with major Danish health news outlets to be released on the
day of launch. Within the first 3 months after release, 8 written
articles were published in trade journals.
A written press release carrying information on the initiative
and a graphical package was provided to all stakeholders,
thereby inviting them to share the launch on their platforms andwith their networks.
In the digital strategy, sponsored LinkedIn ads were plannedfor 3 iterations of advertising, each 3 weeks long (August 21,
2023, and 12 weeks after), and a Google Search strategy andads first ran for 2 months, with plans to restrategize later.
Furthermore, a plan for the organic content for the LinkedIn
profile was designed. To embrace the algorithm, weekly posts
were planned.

Goals for Digital Performance the First 6 Months After
LaunchWe expected high activity at launch and in the following months,aligning with press releases and published articles. We presumed
we would reach a more indicative plateau after 2 months.
Key performance indicators (KPIs), measurable variables forthe evaluation of an initiative, were defined covering the numberof visitors to the website, number of impressions on LinkedIn(impressions are defined as the number of exposures to posts
or ads of individual feeds on the platform; organic impressions
are defined as tailored content managed by hand), and numberof searches on Google Search.
Defining the KPIs for using the website, we set a standard
estimate of the possible number of assessments of children who
visit their general practice, suggesting the number of cases where
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using the guideline and tool provided in hjernetegn.dk would
be relevant. In consensus with experts from general practice, it
was estimated that less than 20% of children’s visits with their
GP require active use of guidelines, and by the same consensus,
most likely <1 patient per week would require the GP to use
hjernetegn.dk. With 3500 practicing doctors in Denmark, the
KPI for visitors to the website was set to 500 visits per month.
On LinkedIn, the KPI was set to 180,000 impressions, estimatedfrom the number of possible recipients by the stated occupationon the platform. In Google Search, the KPI was set to 500 clicks
per month, estimated from GP usage and searches. For the web
page bounce rate KPI, the percentage of users departing fromthe entry page without further interaction was targeted as <55%.

Data
Data analysis to monitor digital use and traffic was conductedutilizing Piwik PRO Analytics (version 16.26; Piwik Pro) [39].
Details on LinkedIn activity were extracted directly from theplatform.

Budget and Resources
The initiative was managed as part of a PhD study at Aarhus
University Hospital, endorsed by the pediatric neuro-oncology
network.
In the 4-year period, the allocation of work hours varied, withworkload increasing and peaking at the time of launch. The
project manager and a communications officer from the Danish
Cancer Society had 20% of a full-time equivalent (FTE)
workload from 2020 to 2022. Starting in 2023, the workloadincreased to 100% FTE for the project manager and 70% FTE
for the communications officer.
Brand and graphic design, technical support, and digitalsolutions were provided by an external communications bureau.
Collaboration and joint strategy were initiated 18 months before
launch. The budget for the external bureau was approximately€100,000 (US $108,000), covering all external costs for building
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and implementing the initiative, as well as running the project
6 months after launch. Funding of approximately €65,000 (US$70,000) was allocated to refine, recommunicate, and manage
the web page and SoMe platforms the second year after launch.

Sustainability
The initiative is intended to become a part of a clinician’s
toolbox, implying sustained use.
Implementation to stay is highly dependent on ongoing advocacy
and a well-planned strategy for communication and up-to-datemanagement of the community and web pages. Dissemination,
through advertising, participating in relevant events, andreaching out on digital and real-life platforms are continuously
required. Consequently, continuous funding is crucial.
Managing the community day to day requires active surveillanceon SoMe channels to enable fast and sufficient responses,
totaling 5 hours of work per week, inevitably spread out andnot only as office hours.

Ethical Considerations and Potential Barriers
It was important to balance the need to identify patients
presenting strong indications for neuroimaging without
instigating high numbers of unnecessary referrals and contacts
to specialty units in both the primary and secondary sectors.
We acknowledged the risk and barrier that GPs might be
reluctant to support the initiative due to worries of added
workload in the primary sector.
Introducing an initiative as the one described, does not require
ethical approval in the state of Denmark, when initiated by
specialist networks as the 5C. Furthermore, when conducting
the mentioned baseline studies [31], ethical approval was
obtained from the Danish Data Protection Agency (file number:
1-16-02-300-19).

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Implementation (Results)
Digital Results and Engagement
hjernetegn.dk had 13,705 visitors from August 21, 2023, toFebruary 25, 2024. Each visit had a mean of 6 engaging actions(click, scrolling, or other interactions). Figure 6 shows thenumber of visitors and returning visitors to the website in thefirst 6 months after launch. Access from smartphones anddesktops covered 78% and 19%, respectively. The remaining
3% was accessed from other smart devices.
From August 21 to February 25 the overall bounce rate was63%. On the page level, the bounce rate was <10%, indicating
the use of the tool within the site. For desktop users, the bounce
rate was 46%. The average time spent on the page was 1 minuteand 45 seconds, and the average number of page views was 2.3.
By November, a plateau was met, showing an average of 300
visits per week, with a return rate of 10%. The bounce rate was
reduced to 54% accordingly. The average time spent on a web
page was 2 minutes, and the average number of web page views
was 2.5 web pages.
On the website, 33,075 pages were viewed, with 60% (n=19,713
views, bounce rate 60%) of visits being the home page.
Half of all visitors accessed the web pages through Google
Search, and 24% accessed them by URL. SoMe outlets
constituted 21% of the visitors, particularly LinkedIn andFacebook. Less than 5% of visitors were directed by referral
from other platforms, such as guidelines, health authority outlets,
health care–related media, and collaborators’ websites.
The sponsored LinkedIn ad campaign constituted the mostimpressions, covering 201,888 impressions and reaching theset KPI. Organic impressions formed 14,133 impressions in thesame period. Figure 7 shows sponsored and organic impressions
in the first 6 months.

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Figure 6. Website engagement 6 months after launch. Visitors on hjernetegn.dk from launch August 2023 to February 2024. The lower graph shows
the number of visitors after the plateau was reached from November 2023 to February 2024.

Figure 7. Impressions of active content on LinkedIn 6 months after launch. Impressions indicate number of exposures to individual user feeds. Sponsoredimpressions: impressions by ads. Organic impressions: tailored content managed directly from the hjernetegn.dk LinkedIn-page.

Implementation to Sustain

ongoing. We are planning to solicit feedback from site users tobetter target HCPs and enhance the site and tool.

hjernetegn.dk is nested within the 5C and the four pediatriconcology centers nationwide. Efforts to maintain and update
the website as well as strategizing to reach even more HCPs are

The hjernetegn.dk approach and guidelines are now taught inmedical programs and among pediatric fellows as part of thehttps://medinform.jmir.org/2024/1/e58886

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curriculum, and the tool is continuously being introduced to
GPs.

Discussion
This study reports the development and implementation ofhjernetegn.dk and the digital impact in the first 6 months after
launch. The initiative covered the development of the digital
diagnostic decision support tool and dissemination.

Impact of the Digital Dissemination Strategy
Contemplating results from the digital strategy, as anticipated,
we saw a very high interest following the main events aroundthe launch, and from August 21 to October 22, the number ofvisitors peaked in alignment with publications in health media.
From November, a plateau was reached, showing a stable
number of visitors and returning visitors. When introducing
new eHealth innovations, it is proposed in other works that the
Gartner Hype Cycle can be applied [40,41]. It shows thatreaching a plateau of productivity is natural but will be precededby a so-called peak of inflated expectations and a trough ofinflated expectations; although there was no true trough, thesuggested phases in implementation matched our digital results,
and the plateau was met with approximately 50 users daily, ofwhom 10% were returning visitors.
The results met our set KPIs. In fact, the number of visitors to
the website far exceeded our expectations. At the plateau, themonthly number of visitors reached 1500, while the KPI was
originally set to 500 within the first 6 months. This might havebeen a low target, but it was estimated based on expert notionsof the number of contacts and that new guidelines take time to
implement. Our results indicate that the communications strategy
in our initiative has some effect. Using a so-called push-pull
strategy, SoMe and ads endorsed and directed users to thewebsite, introducing potential users to the tool, and the website
as the actual tool had the effect of pulling in viewers. The
bounce rate dropping over time indicates the tool is in actualuse for supporting diagnostics and not only for visitors viewing
the website.
For the LinkedIn campaign, the main focus was to createawareness and curiosity. A recent review on SoMe in publichealth campaigning presents the modified hierarchy of effectmodel, suggesting that health outcomes can be improved simply
by SoMe exposure changing individuals’ behaviors [42].
Engagement leads to further impressions in secondary networks,
raising awareness, directing traffic to the website, and supporting
the push-pull strategy setup. Access from users via Facebook
may be the result of user engagement on LinkedIn.
Moving forward, we will adjust set KPIs to encompass theresults from the first 6 months of the initiative. Furthermore, it
is being discussed whether to include more SoMe platforms.

Lessons Learned
Inviting key stakeholders and primary targets to identify drivers
and solutions and to point out barriers in the process is essential
to design for sustainability. Finding a common understandingof the problem of diagnostic delay, especially when approaching
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hesitant and implied that the motivation for the initiative was a
criticism of their efforts in clinical practice, whereas the actual
motivation was to provide support in a challenging process. The
same issue was raised with the external communications
consultants. A clear objective and common vocabulary isimperative for effective communication and collaboration
between clinicians in different fields and the design producers.
Barnes et al [43] advocate for interdisciplinary team approaches,bringing together specialists across the fields of health sciences,IT, and communications when producing initiatives in acomputational health science era. We support this structural
mindset as well as stress the importance of co-creation forcontent, setting the scene for successful health careinterventions.
Through our efforts, we have strived to but not succeeded inreaching all GPs. In the interface between the analog and digitaleras, substantial funds and resources are required to reach allareas. We realize some individuals will not be reached unlesscontacted directly.
The multiphase setup allowed stakeholders to participate
continuously, which strengthened the implementation and isstrongly advised. The design and platforms ensure flexible
editing, allowing add ons easily. This enables future changes
or revisions, or even more tools, to be embedded when needed.
When initiating a similar initiative, we would recommend thefollowing:
•

•
•

•

•

Establish a multidisciplinary team by involving
communication experts, graphic designers, and technicaldesigners from an early stage. Common ground andunderstanding of the aim during production is of utmost
importance.
Invite and engage stakeholders to define drivers for successand possible positive or negative attitudes toward the effort.
Willingness to “kill your darlings.” As senders and clinicalexperts, be receptive to feedback from stakeholders if they
do not see eye to eye.
Have sufficient time and funding. Time is money, andfundraising takes time. In our case, it took 4 years from theformation of the project group to the launch ofhjernetegn.dk. We had initially planned for 5 to 8 months.
Develop realistic plans for follow-up and monitoring.
Initiatives should be dynamic and easy to edit; create
ongoing revision plans. If possible, conduct a baseline study
so that both digital impact and impact in the clinic, as wellas on the primary goal, namely the patients, can bemeasured and evaluated, and the initiative improved
accordingly.

Perspectives
We believe our study design is applicable to many rare diseases.
Initiatives such as the website presented in this study create a
hub for all applications necessary to recognize and interpret
cardinal symptoms, followed by guidelines to support relevant
and timely referrals. In this first edition, the initiative wastargeted toward HCPs. In time, we will revisit the strategy andmay plan to broaden the format to raise public awareness, thus
covering the entire trajectory for patients with a CNS tumor.
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Acknowledgments
We owe gratitude to all participants in workshops and tests throughout the process of developing hjernetegn.dk. Our gratitude
also goes to colleagues and collaborators across specialties, sectors, and regions for offering time and expertise providing insightto their domain and knowledge to ours. Furthermore, we thank the Department of Prevention and Information at The Danish
Cancer Society and The Danish Childhood Cancer Foundation for their support. Finally, we wish to acknowledge Professor DavidWalker and his team at the Children’s Brain Tumour Research Centre, Nottingham, United Kingdom, for their initiative HeadSmart,which laid the ground stones for this and many projects to be built.
hjernetegn.dk was made possible by donations from The Danish Cancer Society and The Danish Childhood Cancer Foundation.

Conflicts of Interest
None declared.

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Abbreviations
5C: The Danish Collaborative Comprehensive Childhood CNS Tumor Consortium
CNS: central nervous system
DI: diagnostic interval
FTE: full-time equivalent
GP: general practitioner
HCP: health care professional
iCHECK-DH: Guidelines for the Reporting on Digital Health Implementation
KPI: key performance indicator
SoMe: social media
TDI: total diagnostic interval

Edited by C Perrin; submitted 15.04.24; peer-reviewed by S Sarbadhikari, G Myreteg; comments to author 13.05.24; revised version
received 22.05.24; accepted 02.07.24; published 25.07.24
Please cite as:
Weile KS, Mathiasen R, Winther JF, Hasle H, Henriksen LT
Hjernetegn.dk—The Danish Central Nervous System Tumor Awareness Initiative Digital Decision Support Tool: Design and
Implementation Report
JMIR Med Inform 2024;12:e58886
URL: https://medinform.jmir.org/2024/1/e58886
doi: 10.2196/58886
PMID:©Kathrine Synne Weile, René Mathiasen, Jeanette Falck Winther, Henrik Hasle, Louise Tram Henriksen. Originally publishedin JMIR Medical Informatics (https://medinform.jmir.org), 25.07.2024. This is an open-access article distributed under the termsof the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use,
distribution, and reproduction in any medium, provided the original work, first published in JMIR Medical Informatics, is properly
cited. The complete bibliographic information, a link to the original publication on https://medinform.jmir.org/, as well as thiscopyright and license information must be included.

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