[MA 2024 18] User assessment of the Dutch website ikhebdat.nl
Erfocentrum
Proposed by: Dr. Marloes Derksen (assistant professor) [m.e.derksen@amsterdamumc.nl]
Erfocentrum is the Dutch National Information Centre on Heredity. It is their mission is to inform people on heredity in relation to health and hereditary conditions. It enables people to make informed decisions on DNA-matters.
The Erfocentrum information, is mainly shared with a broad public through different websites. With erfelijkheid.nl (with about 3,000,000 visitors per year) being the largest.
The Erfocentrum is an independent and non-profit organization. Complex information on genetics and hereditary conditions is made accessible and understandable for laymen through the efforts of the Erfocentrum. http://ikhebdat.nl is a website of the Erfocentrum especially for children.
Introduction
The website ikhebdat.nl aims at fulfilling information needs of children with a hereditary condition (in the family). Children might want to learn more about genetics for their own sake or might want to use the information to explain their condition to others, for example in a paper or a presentation. Parents might also gain knowledge by viewing the information on the site.
The site contains information about hereditary diseases subdivided into the following sections: what is heredity, personal stories, books, videos, a list of diseases, assignments, tips for parents, ask a question and a section about the website.
Designers of electronic resources need to consult key stakeholders to enhance the effectiveness and usability of resources for people with a rare disease. (1) Human-centered design approaches are useful for bringing end users and developers together to optimize user experience and impact public health. (2)
Description of the SRP Project/Problem
There is no recent knowledge about the actual profile of the users of the site. Their age is not known. And more importantly, the Erfocentrum does not know if the site meets the information needs of the users or the target group.
Does the intended target group of 8 to 12 year olds visit the website indeed? Do they find the information they are looking for and do they find the website attractive enough? These are questions the Erfocentrum seeks to be answered.
Considering the number of visitors, it seems that there is a downward trend: Nowadays the site attracts about 20,000 visitors annually whereas in earlier years the number of visitors was about 40,000 per year. Unfortunately the figures of then and now, are not really comparable, because the google analytics system is changed recently in accordance to the General Data Protection Regulation (GDPR).
Children are not an easy group to include in an investigation. Informed consent requires special attention. Children aged 12 to 16 can sign a consent form themselves and need a written consent from both (authoritative) parents, legal representative(s) or guardian. When conducting research with children under the age of 12, permission from both parents, legal representative(s) or guardian is required to participate in the research, but the child itself does not have sign a consent form. And if a child turns 12 during the study, special measures must be taken.
Research questions
This study will take a user-centered design approach, ensuring that end-users are engaged in every phase of the design process(3). The main research question is: What is the user experience of hebikdat.nl? Subquestions are:
1. What is the context of use?
2. What are user requirements and needs?
3. What are design solutions?
4. What is the user experience of the design solutions?
5. What are recommendations for further optimization of the user experience of hebikdat.nl?
Research methods include analyses of website analytics, user interviews (n=10), (co-)creation of design solutions, usability evaluation (e.g. think aloud protocol, heuristic evaluation).
Expected results
The Erfocentrum expects an user assessment to gain insights into user needs of ikhebdat.nl users and input to improve ikhebdat.nl in order to be make the site more attractive to the users.
- Novel insights into the end-users of hebikdat.nl;
- Recommendations for updating hebikdat.nl content, design, and usability wise. Expected stage of maturity: prototype/pilot (4).
Internship
The Erfocentrum expects from you as an intern, to:
- deliver an advice report and presentation with conclusions and concrete recommendations for website optimization (in Dutch);
- work independently on the assignment;
- bring your own devices (laptop and smartphone);
- be present at the Erfocentrum office for at least 1 day per week (Amersfoort).
Our offer to you as an intern:
- the opportunity to perform an interesting study with a high chance that the results will actually be used in practice;
- the chance to participate in a small but enthusiastic team, in a working field where developments go fast. We operate in a large network and have great impact;
- the guidance you need to successfully complete your internship.
We seek a Dutch speaking student, given the expectancy that end-users only speak Dutch.
This internship position will be rewarded with a small allowance.
Time period
November 2024 – June 2025
Contact
Daily supervisor:
Jacqueline Pot (director), j.pot@erfocentrum.nl, 033-3032110
MI contact:
Dr. Marloes Derksen (assistant professor), m.e.derksen@amsterdamumc.nl
eHealth Living & Learning Lab, Department of Medical Informatics, AMC
References
1. Long JC, Best S, Nic Giolla Easpaig B, Hatem S, Fehlberg Z, Christodoulou J, et al. Needs of people with rare diseases that can be supported by electronic resources: a scoping review. BMJ Open. 2022;12(9):e060394.
2. Hasson RE, Xie M, Tadikamalla D, Beemer LR. Using a Human-Centered Design Process to Evaluate and Optimize User Experience of a Website (InPACT at Home) to Promote Youth Physical Activity: Case Study. JMIR Hum Factors. 2024;11:e52496.
3. Holtzblatt K, Wendell JB, & Wood S. (2004).?Rapid contextual design: a how-to guide to key techniques for user-centered design. Elsevier: San Francisco.
4. World Health Organization. (2016). Monitoring and evaluating digital health interventions: a practical guide to conducting research and assessment. Retrieved on July 19, 2024 from https://www.who.int/publications/i/item/9789241511766