Patients’ Care Journey via the Internet

J Clin Pathways. 2021;5(7):20-21. doi:10.25270/jcp.2021.09.4

Patients have taken a dramatic shift from a being a passive party in their health to becoming an active force in every aspect from diagnosis to treatment to adherence. There is much that health care providers can do to improve this journey in terms of overcoming challenges and improving outcomes. This journey begins with patients first seeking a diagnosis, which often can take several years. While this can occur during a general physical exam or an incidental finding while some other issue is being investigated, most often the initial diagnosis is the result of patients beginning the journey with a question that they search for answers from the internet.

Much of a patient’s prediagnosis questioning begins when a patient begins to investigate a concerning sign or symptom on the internet. As such it is important for health care stakeholders to work with internet outlets to assure the accuracy of these resources and the value in directing patients toward appropriate diagnosis and treatment while avoiding much of the misinformation that is prevalent online

The results of a review by Tan and Goonawardene contribute to the understanding of the patient-physician relationship of Internet-informed patients.¹ The findings of this review showed that Internet health information seeking can improve the patient-physician relationship depending on whether the patient discusses the information with the physician and on their prior relationship. As the Internet provides better access to health information through the Internet, patients expect to be more engaged in health decision making. This changing demographic requires revisiting and adapting the traditional models of the patient-provider relationship and communication strategies. As such, focusing on both sides of this care is required. This means that the websites that patients are using or directed to need to be vetted to assure accurate information, while physicians need to be open and prepared to engage patients in open discussion about what they learn from the internet.

Patients are right to play an active role especially in rare diseases as often times their provider is unaware of the specific characteristics to make a diagnosis. Remember, physicians are trained under the mantra, “when you hear hoofs think horses not zebras.” As a result, rare disease diagnosis is often delayed or missed in favor of more common conditions. A recent study by Levine revealed that when confronted with new medical symptoms, many people turn to the internet to understand why they are ill as well as whether and where they should get care.² Specifically, this study demonstrated that an internet search for health information was associated with small increases in diagnostic accuracy but not with triage accuracy. Health care stakeholders certainly can play a role in improving these outcomes, both in terms of diagnostic accuracy and triaging to the right setting of care through online resources

Upon diagnosis, patients often are confronted with a wide range of treatment options, some of which are not approved or have questionable value. This is especially true in rare diseases, where valued treatment options are limited. With an array of treatment options with varying efficacy, adverse events, and patient burden, patients may be left to assess each on their own in order to make the best individual choose. 

Sometimes the opportunity to participate in a clinical trial presents itself within these treatment options. In this situation, patients need transparency into a clear understanding of expectation for their participation in a clinical study.

Of course, diagnosis and treatment do not represent the end of a patient’s journey, but rather the beginning. Patients face ongoing disease management, which includes making informed decisions involving adherence. Adherence to treatment is based on several factors that begin with a patient’s perception of the benefits and risks. Treatments with lower perceived value, where benefits are under appreciated and risks overestimated, have lower adherence; however, all treatments suffer from adherence issues over time.

Pharmaceutical manufacturers have an opportunity through direct-to-consumer/direct-to-patient education to positively impact patient behavior to improve health. By providing a positive perception of treatment, patients are more likely to adhere to treatment plans. Beyond establishing the true value of a treatment, aides also can assist with reminders, nurse interventions, and financial assistance to support adherence.

A balance is needed to improve outcomes. A recent study by Zavorotnyy and colleagues showed that knowledge concerning the disease and its treatment influences a patient’s willingness to follow the health care provider’s recommendations and mutual decision-making.³ This study investigated how Internet surfing for health-related issues and attitude toward the relevance of the online information impacts treatment adherence. The findings showed that more extended exposure to Internet surfing for health-related issues and attribution of higher personal relevance were associated with poorer medication adherence. This demonstrates the need for balance for the ‘right’ quality and quantity of information.