Consumers or Participants? Autonomy and Pediatric Health Care
Joia Nu?ez - MD, MSc
Helping health and tech collaborate for the sake of people.
With the advancement of technology, children and adolescents are increasingly using information and communication technologies (ICT) for their health and well-being. From tracking physical activity and nutrition with mobile applications to virtual visits to doctors and online health communities, minors are becoming increasingly involved in their own healthcare. It is important to understand the role of children and adolescents as consumers of electronic health and support them in making informed decisions about their health.
The pediatric self-care model considers the management of child health not only as disease control and medication, but also as maintenance activities of medical care (e.g., blood extraction, routine procedures, medical visits), complementary therapies (such as physiotherapy), and healthy behaviors (exercise, nutrition, rest). In an attempt to address several of these aspects, I selected some applications that focus on healthcare for the pediatric and adolescent population and that I will develop below:
Telemedicine
In recent years, remote modality has begun to be established in various scenarios: work, education, academic, social. For this context, adolescence presents itself as a great window of opportunity; since this population circulates naturally in the virtual universe, handles new technologies with ease, and has an innate ability to learn to use them, incorporate them into their daily routine, and make the most of their potential. This scenario challenges health professionals to go through the process of adopting new tools and generating a real and sustainable paradigm shift in medical care. For this reason, it is important to train, share with peers, and understand the limits and scope of these new resources.
One of the concerns that have been raised about the increased use of telemedicine is whether it will improve equity in access to care or, on the contrary, worsen disparities in access due to the digital divide. This is because telemedicine has the potential to exchange a set of barriers to care (transportation problems, time constraints, hidden costs of missing work), for another (need for internet access, device capacity, computer knowledge).
In a service delivery model in full transition, the tensions of this stage are evident: while some of its advantages are attractive, some of its disadvantages are high as new problems that will have to be addressed on the way to the new normal. Notions such as the validity of certificates, electronic prescriptions, the jurisdiction of registrations or inclusion in malpractice insurance will have to be reviewed and reformulated, while the role of family members and companions during the consultation must be rethought, taking into account confidentiality and privacy, while bridges must be built to cover the economic access gaps to technologies.
Privacy and confidentiality
In Argentina, in 2006, National Law No. 26,061 on Comprehensive Protection of the Rights of Girls, Boys, and Adolescents was enacted, which imposes the obligation to respect the status of a subject of law, and to take into account age, degree of maturity, discernment capacity and other personal conditions in the context of comprehensive care for adolescent patients and the conflicts of privacy and confidentiality inherent in this stage of life. From this Law, the following definitions are derived:
Clarification: Where parents are concerned, caregivers' capacity to give consent should be extended to cover all cases.
It is then worth asking, if from the age of 13 an adolescent can begin to make decisions regarding their health, should their parents manage their medical record?
It is common to think that adolescents are not mature or responsible enough to manage their own medical information, and that they need the guidance and supervision of their parents or caregivers. Parents often feel the need to be aware of their adolescent children's health, especially if they have a chronic medical condition or need long-term treatment. In addition, concerns about the privacy and security of medical information lead caregivers to want to have control over it.
Health portals in adolescence
Cornell University conducted a 3-question survey of the general population in which it altered the order of the last two.
1- Should a 16-year-old have their own account on the patient's electronic portal?
2- Should a parent or guardian be able to see their 16-year-old's complete medical history?
3- Are adolescents less likely to talk to their doctors about sensitive issues if they knew their parents could see their medical history later?
This survey showed that the public supports two somewhat contradictory points of view: on the one hand, that parents should have access to medical records of their adolescent children, and, on the other hand, that this access to information could incite adolescents to hide important information from their doctors. In fact, support for parental access to adolescent information was much lower among respondents who were first asked if it would be less likely for an adolescent to talk about sensitive issues with their doctor knowing that parents can read that information. In other words, the mere fact of inciting respondents to first consider not respecting confidentiality was associated with a reduction in support for access to information, regardless of what they responded to that question.
From this study, it is clear that:
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although medical societies recommend maintaining confidentiality for the care of adolescents, public opinion is largely in favor of parental access to information.
The introduction of a small bias oriented towards asking whether parental access could damage communication between the adolescent patient and their doctor, was enough to increase the acceptance of adolescent confidentiality, and seems to work as a strategy to prepare parents to accept patient electronic portal policies that medical centers impose at the beginning of adolescence.
Although patient portals allow secure information exchange between patients and providers, offering a solution to existing challenges in the confidential communication of adolescents, the establishment of portals for adolescents has significantly lagged behind trends and advances in adult medicine.
There are currently three alternative models for implementing a health portal aimed at adolescents:
In the confidentiality-based adolescent model, parents or caregivers can choose to access through a proxy access, which allows them to see limited information, such as their child's vaccination list; they cannot, however, see the list of problems, medications, allergies, upcoming appointment review, or laboratory results. In the other two models, on the other hand, parents have access to all information, causing the patient to lose confidentiality.
Adolescent-based EHR portals represent a platform that highlights family complexities in the care of adolescents, leading institutions to make decisions about adolescent confidentiality and parental involvement in adolescent care that may be convenient, but that may violate privacy, state law, or accepted best practices for adolescent care.
As in any service aimed at the general public, we are faced with a polar tension between access to information and the need not to compromise privacy and confidentiality. These polar tensions cannot be resolved, only managed, and require constant review to ensure that they remain balanced in relation to the context.
In the same line, the administration of health information in adolescence poses a comparable dilemma: while parents or guardians have legal responsibility for the actions of adolescents, it is not directly extendable to a right to relevant information on the medical records of those adolescents.
A failure to create and maintain balance in this tension can lead to serious consequences, such as adolescents being driven to hide important information from their doctors, for fear that their parents or guardians may find out. In any situation where health is a factor, the design and implementation of technological tools must consider the preeminence of these medical issues and their contexts over technical challenges.
Medical Devices in Pediatrics
Although there are multiple technological tools available for pediatric medical care, barriers to their use by this population have been detected. There are few studies, for example, on the acceptability of medical devices in the pediatric population, despite multiple difficulties being detected. One possible cause is that historically, the tendency was to seek adaptations of what already existed and reverse it in a smaller size.
The toothbrush as a user-centered pediatric design model
For so many years, all toothbrushes sold for children were as thin as those for adults, but the only difference was that they were shorter in length. The challenge was to design a toothbrush that children would actually want to use. So, they went to investigate the audience. They went to customers' homes and studied how children brushed their teeth. The idea behind this request was that, while most adults know how to brush their teeth, there might still be something that children do differently that could be overlooked.
From this observation, the team learned that the way children hold the toothbrush was different from the way adults hold it. Because children tend to have less finger dexterity compared to adults, they hold the toothbrush more in their fist than in their fingers. That's why adult toothbrushes are narrower and can be difficult to handle while in a child's closed fist.
Once the problem was defined, they needed to design something that would fit comfortably in the contour of a child's fist. Their solution was a new style of toothbrush that featured a wider handle and a soft, textured grip. The prototype was tested in the same homes that participated in the initial product research. The results showed better comfort when brushing and improved overall oral hygiene. Additionally, bright colors and graphics were included to make the brush more visually appealing to children.
Both in the design process and in the validation process, there is a lack of dialogue between human factors and technical factors.
This means that most of the information found in the literature in this field focuses either on technical factors or on the human dimension, but almost never on a shared approach that manages to generate a dialogue between both parties during the design process.
As the current public health situation evolves, pediatric providers will need to continue supporting these young people and their families to adapt to uncertainties, establish new routines, access medical care, and use new technologies to promote disease management and reduce poor health outcomes.
It is our responsibility to create a dialogue between human factors and technical factors, both in the design process and in the validation process of the tools. This implies knowing the end user, as well as their context.