This is an academic study carried out by master students from AAU CPH. The thesis suggests a rethinking of the role of the hearing-impaired individuals within the healthcare of hearing treatment in Denmark. Exploring what problems hearing-impaired individuals are facing, when pursuing hearing aids, obstacles regarding lack of transparency and information within the system were uncovered. Based on Actor network theory and the use of Communities of Practice, this project seeks to provide a solution that can foster greater engagement of the hearing-impaired individuals within the system, while at the same time create greater transparency regarding the different treatment options. Methods used are virtual observation of webpages and Facebook communities, interviews with key-actors, and prototyping of concept, among others. The solution presented is the platform Hør Her, which serves as the primary platform for user-to-user knowledge and experience sharing. Additionally, all available information and guidance regarding hearing treatment in Denmark are centralized through the platform. The solution seeks to facilitate alignment between hearing-impaired individuals, the system of hearing treatment, and the surrounding actors.
Untreated, disabling hearing loss poses economical risk for the society as the condition of having a hearing loss causes fewer people in the labor market and increased healthcare costs. Hearing loss has shown to create negative social and economic consequences for the individuals and the society. With a population looking forward to a generally longer lifespan, where people are foreseen to experience a hearing-loss at a younger stage of life, there will be an undoubtedly greater amount of people with a disabling hearing loss in the future (Shield, 2019). Furthermore, dealing with an untreated hearing impairment is a condition that can lead to social isolation and depression.
The amount of people with hearing impairment is significantly high in Denmark. Approximately 800.000 people have a hearing loss in Denmark which means that every 6th Dane above the age of 18 (Høreforeningen, 2020). That makes having a hearing problem the most widespread disability in Denmark. Yet people with a hearing loss are often overlooked as their impairment is invisible to others.
With this project, we intend to shed light on the hearing-impaired population and what obstacles they typically face when trying to find their way through the Danish hearing treatment system. Through interviews and survey questionnaires, problematics experienced by hearing-impaired individuals came to surface. Reoccurring issues such as poor information on treatment possibilities and a lack of transparency within the current system were identified. The waiting time on getting an appointment with an audiologist within the public sector was additionally recognized as a frequently cited problem from the hearing-impaired. Investigating the processes and procedures a hearing-impaired typically go through, the hearing treatment system appeared to be both complex and cumbersome.
A FRAGMENTED SYSTEM
The current system can be described as fragmented (see figure bellow). Currently, there is an abundance of ways to treat hearing impairment and there is a risk that the individual citizen is being sent back and forth between different actors to get a complete service, whether it being through the public or private sector. That includes diagnosis and information about what it means to live with hearing impairment, hearing aid fitting, instruction, guidance, counseling, education, and follow-ups. For some individuals, it may be difficult to navigate due to complexity and the divisions between public and private services (Tobberup, et al., 2015). For instance, some of the hearing-impaired may find it difficult to seek out knowledge about their possibilities and this may lead to creating confusion, inappropriate hearing treatment, and a waste of resources such as time, money, and materials (Sundheds- og Ældreministeriet, 2018).
GEOGRAPHY-DEPENDENT WAITING LISTS & CONFLICT OF INTERESTS
If hearing-impaired individuals chose to seek help through the public healthcare system, it can take up to 115 weeks to get HA, depending on which region or municipality the hearing-impaired individual live in. In some cases, because of long waiting lists, individuals choose to seek help through the private sector. However, if the person is under 18 or suffers from a complex hearing impairment, those individuals do not have any alternative but to wait for public HAs (Sundheds- og Ældreministeriet, 2018).
Hearing-impaired individuals can easily be in doubt whether the doctor’s guidance comes from a professional basis. The way the policies are constructed today, there is nothing to prevent ENT doctors or private audiology clinics to have economic interests when treating individuals and assigning them with HAs. This uncertainty about the professional’s financial interests may create a conflict of interest and distrust between the hearing-impaired and healthcare professionals (Sundheds- og Ældreministeriet, 2018).
LACK OF PATIENT-CENTERED CARE
For some participants, the lack of patient-centered care was the reasoning for not being satisfied with the process, where it was described it as “assembly line-like”. Overall, certain patients felt that a holistic approach within treatment is lacking. They wished that doctors showed more interest in what patients have to say and how they experience their own condition. Furthermore, some explained that they have encountered different audiologist during the process, and with each one, they would “start from scratch”.
LACK OF TECHNICAL GUIDANCE
Regarding the technical guidance patients received from their doctors, participants explained that it was not satisfactory and that they either had to ask others for help or seek solutions on the internet. The time that they spent on consultations was not enough to learn how to deal with the Has. This was the most common problem when having received the new devices.
LACK OF TRANSPARENCY
Another mentioned problem area was the lack of transparency within the Danish health system, where participants of the research explained that it is particularly difficult and confusing for people with a newer hearing loss.
Some pointed out that they should have been more informed regarding their rights and opportunities for treatment while many were not aware that they had the possibility of treatment outside of their region. In some cases, this can ease and speed up the process. Additionally, some were not aware that they could get grants for HAs at the approved private clinics.
GOVERNMENT INITIATIVES
The current hearing treatment system lacks in uniformity of treatment carried out in both the public and private sectors, while the information about choices and treatment options may seem incomprehensible to the citizens. Therefore, in the period from 2019 and 2022 the Danish government is planning to spent DKK 215 million on the two main areas of action; firstly, creating an easier way for the individuals to go through the system, where they will be able to easily navigate between different treatment options and solutions that fits their needs (Sundheds og ældreministeriet, 2018).
NONGOVERNMENTAL INITIATIVES
Hearing-impaired individuals in Denmark are further supported by voluntary organizations, who are working on ensuring better living conditions and opportunities for the hearing-impaired, so these can communicate and participate in society as citizens with normal hearing. One of these organizations is Høreforeningen , the biggest association in Denmark for hearing-impaired which has its branches in almost all municipalities in Denmark. It is community-based, with over 8000 members and together with other organizations like Danske Handicap-organisationer are being a representative voice of this community by being active in the policy-making so this community is not being left behind and that their rights are protected and fulfilled (Handicaporganisationer, 2020).
ONLINE SUPPORT COMMUNITIES
Hearing-impaired these days can also seek help in virtual space through online support communities. Moreover, interacting in online communities has been beneficial during the time of the pandemic outbreak that occurred during this research. Here most of the institutions were closed and in-person interactions were restricted by the governmental guidelines in the spring 2020. In Denmark, these online support communities for hearing-impaired are seen facilitated on Facebook in format of Facebook groups, moderated by the voluntary organizations that support them.
The existence of the Facebook community we perceive as a proof that the hearing-impaired needs not are being fully met through the governmental and institutional support. When these are not able to provide a certain kind of support, the members of the community are seen to turn to each other.
The role of this Facebook community is perceived as being of great importance in the system while it facilitates the hearing-impaired, providing them with their own knowledge sharing space. As a social media platform, it is not specialized in facilitating online support communities. This infrastructure and the way the platform is preconceived influences how the users utilize it and consume the content. At this time, the members are adding content on the discussion page, but the content is being “moved down” when new content is being added, or the content being removed. Within this way of managing the content, we have identified a knowledge drain occurring while the hearing-impaired community cannot easily access that knowledge by e.g. using a search option. Furthermore, the individuals who are not using Facebook or have a profile are excluded from this community and the information being shared. We could assume that the actor who is monetizing the most in this configuration is Facebook itself and therefore, we are questioning whether it is the most optimal solution for the hearing-impaired and other actors in the hearing treatment system, regarding the knowledge accumulation and accessibility.
HørHer Concept
HørHer (Listen Up) is a knowledge-sharing platform based on online user-to-user interactions where knowledge can be shared between experienced and inexperienced users, healthcare professionals, HA providers, and researchers. The focus of the platform is for us to screen and collect all available information online and organize it so the users of the platform easily can access the information they need in their process of choosing their treatment or maintaining their hearing aid solution. These screenings will be done in cycles so that the information found in HørHer is up to date.
USER
Hearing-impaired members are the central figure of the platform. Besides him or her, hearing professionals like audiologists, ENT doctors are also present are part of this online community. Hearing-impaired will be distinct from hearing professionals, at the first glance with the color that symbolizes their role on the platform (e.g. doctors would be marked as blue). Users will have opportunity to customize his profile and how much information they wish to disclose. On their profile what is going to be visible are bio, audiogram, activities like imposed questions and answers, statistics but also contribution to the community that will be shown in the form of rewards. Furthermore, they would have the possibility to send direct messages to each other.
DEBATE FORUM
The platform will allow for this knowledge base to grow in the debate forums where discussion points could include, Choice of hearing aids, Use of communication centers, Choice of treatment, innovation within the hearing treatment, and others. The discussions will be stored and tagged so they ‘pop up’ when search upon within the platform. We want as many diverse perspectives on problem-solving which is why the members are encouraged to share their approach and choices in their treatment.
COLLECTING AND CATEGORIZING DATA
The platform will be connected and forward members to other websites that contain useful content for them, e.g. producers and institutions. Concluding from our analysis of various websites it was made visible that the following information areas should be available for new and experienced hearing aid users: Waiting time of treatment options will be fetched from public and private servers and then listed at our platform going from lowest to the longest amount of waiting time in each region. The selection of HA in the public sector will be made visible showing the different types of HA the public can offer, which regions offer them, and lastly a guide to the different types of HA strengths and weaknesses. Discussion rooms with useful answers and information will be stored and categorized to guide new and experienced users in the right treatment.
SOCIAL MISSION
The mission of the platform is to provide a central online space where users can access important and thorough information, interact with other individuals suffering from hearing loss and experts from the field of audiology. Moreover, we see hearing-impaired as the experts where the role of the platform is to facilitate and empower this group to actively participate in the community. Their contribution will be through sharing their firsthand experiences and knowledge, adding content to the platform, and through this interaction with likeminded users. On behalf of that, the hearing-impaired users are to be seen as the central and most important aspect of the platform.
Input represents all the means and resources like time, money, knowledge, ideas but also alignment of different actors in the conducted activities
Output represents the result of these activities which is HørHer knowledge sharing platform
Outcome represents the short-term effects that are achieved for the targeted group from implementing the concept. We see some of those effects as in empowering the hearing impaired to play more active role in the system and taking the responsibility for themselves and their community. Hearing experts, improving their knowledge, skills and approach. Hearing association, strengthening their role as an institution that represents this group in policy shaping.
Impact: presents the achieved effects for the society in a long run. We see the system being reorganized, where the policies are put into place so they serve the hearing impaired. We see Denmark being #1 and example for others to follow when it comes to hearing treatment and in wellbeing of their hearing-impaired citizens.
HEARING ASSOCIATION’S, DOCTOR’S, PATIENT’S AND GOVERNMENT’S INTERESTS
With this concept we are going away of the idea of the hearing impaired as they are a distinct group outside of the mainstream society. We recognize that hearing loss is something that we all might experience during our lifetime and therefore is a part of a normal life course. We wish that this population actively participates in the mainstream society and design, that design itself becomes rather inclusive then exclusive.
Disability does not arise within the individuals and their impairment but rather with system that fails to take into account their needs and capabilities. If people can be excluded by the design, then they can also be enabled and included by thoughtful, user-centered design.
Online communities are valuable places to share and create knowledge. They have to be cultivated in order to fully create the value they may bring to their environment and we need to provide suitable and usable tools so that it is able to cultivate itself appropriately. We need to cultivate this community by having open dialog between inside and outside perspectives and invite different levels of participation.
