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Combatting Medical Paternalism with Digital Health Communication Strategies

Examining power in the patient-provider relationship and presenting strategies for patient autonomy and retention

baby and mom at pediatrician appointment

The parent-provider relationship is a complex dynamic, one that has been the focus of several healthcare workforce research studies. In the past several years, largely due to the COVID-19 pandemic and the integration of health information onto social platforms, we have seen major changes in the way that medical providers interact with their patients. Particularly, there has been a shift in how much patients trust the advice of their providers, as well as what information patients rely on the most to make health-related decisions.

Power in a patient-provider relationship

The term “medical paternalism” has been coined relatively recently, but the power dynamics that are in play between patients and health providers have been present historically. An article by the University of Missouri School of Medicine describes the paternalistic model of the patient-provider relationship, which is when physician-driven health decisions are favored over shared decision-making (SDM) between a patient and their provider. While medical professionals are taught to uphold the value of patient autonomy above their own knowledge and experience, it can be very easy to slip into the school of thought that “experts know best”, which encourages and perpetuates an imbalanced power dynamic between patient and provider. Particular to parent populations, data from past literature reveals that while there are many factors that influence health decisions, parents prefer to share important decisions with their healthcare provider.

There is some evidence against this, such as an article in the AMA Journal of Ethics, which brings up that medical decisions can often induce distress and highly emotional responses from patients. Preventing increased stress for patients is certainly important, but an “asymmetry in authority and power” held by medical providers due to their training and fieldwork experience can lead to a lack of inclusion altogether of patients in health decision-making. What we need to consider is that patients have radars for their own health status and can tell when something doesn’t feel right; similarly, parents are the experts and advocates for their children and their voices should be heard with care.

Patient autonomy in parent populations

This brings us to the importance of patient autonomy, which is the patients’ right to take their own health-related decisions without biased influence from their provider, and one of the primary reasons for the SDM model.

At a high-level, practicing medical autonomy is a way for patients to protect their interests and advocate for their own health needs or the needs of their families. It also gives patients the power to decline treatments or interventions that they may not want or need, which in turn urges doctors and patients to have deeper conversations about the best path of individualized care. In fact, an article from the Annals of Internal Medicine presents the “enhanced autonomy” model and emphasizes active exchange and negotiation of ideas for care between patient and provider.

When we focus on parent communities, specifically new parents, we have to acknowledge that parental responsibilities can introduce challenges and many demands on one’s time, which can distract from exercising full autonomy in healthcare settings and in conversations with medical providers. As an example, the amount of information being given to a parent at a doctor’s appointment can be overwhelming and therefore less easily retained. Therefore, it is even more crucial to ensure that parents have not only strong channels of health communication but also multiple nudges of the same information.

This is where digital health communication can make a real difference. Social media is particularly known for cultivating partnerships between organizations and movements across the globe, hosting advocacy campaigns, and fostering support communities, all of which can be useful resources for parent groups. Along the same vein, health support through social media can improve patient retention in our systems of care.

How social media and digital platforms can promote patient retention

Retention in healthcare is established with a patient and their family builds a relationship with their providers that is trusting and puts the needs of the patient first such that the patient stays with that provider or practice for as long as they need care.

There is robust research on patient recruitment and retention strategies across disciplines and priority populations. One study shares that web-based methods of communicating about appointments, health notifications (such as lab results and medication reminders), and even advertising had positive impacts on retention. Digital methods of health information and resource-sharing can also provide asynchronous and convenient ways for patients to engage more acutely and frequently in their own care.

Now more than ever, social media platforms are the home of various forms of social support that can be very beneficial to parents. A childhood chronic illness study found that common challenges faced by parents include social isolation and frustration with healthcare systems. In addition, research supports that physicians are relying on technology more regularly, from gathering data to managing patient records, to making and communicating medical decisions. This is due, in large part, to increasing demands on the health providers’ time, preventing them from giving focused attention to any patient and their specific needs. This is another reason why taking steps to improve trustworthy, relevant, and accessible health information sources needs to be prioritized.

Future directions

Generally, the public searches a variety of health topics through social media sources, and after the pandemic, so much health information and advice is being shared online. Parents in particular have been found to use social media as a supplement to interactions with their health provider before and after a diagnosis, and are motivated to do so by hearing about the experiences of other parents in their community. Communities formed across social media can also engage in more expansive resource-sharing that reaches a wider range of people than the more common forms of social support, such as family, friends, and local support groups. It can also connect specific groups of people who have had similar lived experiences to raise awareness of health needs and unresolved disparities within those groups.

However, data has found that health resources shared online are only partially relevant and useful, as reported by users, and the majority of this information is shared by online communities and organizations, not researchers and clinical experts. Given this point, when our objective is to reach populations in need and reduce disparities, we need medical professionals to be a part of the shift and not only have a role in the content shared online, but also actively work to help prevent the spread of misinformation, something we discuss in one of our own articles. This will in turn work to enhance the tools available to patient populations so that they can feel empowered to be actively involved in their own health decisions.

What we need to focus future research efforts on is finding out what sources of information parents are relying on the most to make healthcare decisions and how that might be impacting trust with their medical providers. The challenge emerges when we ask ourselves, “How do we cater to each patient’s individual needs and lived experiences?” AI-integrated patient education strategies can be the way to do that, which is the crux of what Social Cascade aims to do.

At Social Cascade, we help local and nationwide health organizations who are already committed to creating online content for their patients to expand their reach through their social media platforms. We automate posts, uploads, and track follower engagement to not only see what types of content work best, but to also find ways to encourage parents and caregivers to connect with their health providers. Additionally, the Social Cascade team will be working with the Center for the Study of Social Policy (CSSP) over the next few months to address gaps in reliable health information as it pertains to parent populations, as was mentioned in previous posts, and developing strategies to answer those unmet needs through our work. Ultimately, our mission is to control the cycle of misinformation, strengthen health literacy among our priority patients, phase out generalized health information in favor of individualized messaging, and re-establish trust in our healthcare systems.


References

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Allen, C. G., Roberts, M., Andersen, B., & Khoury, M. J. (2018). Communication About Hereditary Cancers on Social Media: A Content Analysis of Tweets About Hereditary Breast and Ovarian Cancer and Lynch Syndrome. Journal of Cancer Education, 35(1), 131–137. https://doi.org/10.1007/s13187-018-1451-4

Drolet, B. C., & White, C. L. (2003). Selective Paternalism. AMA Journal of Ethics, 14(7), 582–588. https://doi.org/10.1001/virtualmentor.2012.14.7.oped2-1207.

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