How does online health information seeking affect the patient and the relationship they have with their doctor?
By Emma Okeke
Year 2, Medicine, Plymouth University
Email: emma.okeke@students.plymouth.ac.uk
Abstract
As the internet continues to expand, it is becoming increasingly common for patients to search for health information and symptoms online . To explore the advantages and disadvantages of patients seeking health information online and how doing so may affect the relationship patients have with their doctor, studies and statistical evidence from the last 11 years were gathered from various databases and search engines. The findings showed that the internet allows patients to expand their knowledge, helping them to become more involved and engaged during consultations. Additionally, the internet can provide advice and reassurance through blogs and chatrooms. On the other hand, anxiety can develop from confusing or inaccurate information. Patients self-diagnosing and medicating based on what they have found on the internet is also a problem. The relationship that the patient has with their doctor can either deteriorate or become more collaborative. In conclusion, online health information seeking is becoming inevitable, and for patients it can have a positive or negative impact on health. It is important that patients realise the need for balance between knowing what to seek online and knowing when to visit their doctor; doctors should also respect patient autonomy.
Introduction
The World Wide Web became available to the public domain on the 6th of August 1991. Since then, the number of websites has increased to 1.8 billion in January 2018, according to Tek Eye.1 Along with this growth, the number of health-related websites has also increased; there are over 50,000 organisations providing internet-based health and social care in England alone, according to The Guardian.2 Evidently, the internet has grown and is still expanding. Its pervasive nature makes online health information seeking very topical for this and the coming generations of doctors, as patients have a large abundance of information at their disposal. Indeed, a UK survey of over 2000 people by Statista found that 73% of individuals use or have used the internet to search for health information.3 The positive side to this is patient empowerment and growth of knowledge; people can have a greater understanding about how their own lifestyle can affect their health or how to manage their medical condition. On the contrary, this large abundance of unregulated information can lead to misunderstandings and anxiety for certain individuals. How the relationship between the patient and doctor changes will depend on how an individual is able to cope with this extensive amount of information. The aim of this paper is to further explore the beneficial and detrimental effects that online health information seeking may have on a patient and the relationship they have with their doctor.
Literature search
Research commenced in November 2018. Using the PsycINFO database the term “cyberchondria” was searched, which produced 36 results. These results were examined and the most relevant seven articles were included. Articles were excluded if the population group or topic they focused on was too specific or irrelevant; for example, if they focused on those with obsessive compulsive disorder (OCD) or how to treat cyberchondria. References within a journal were inspected for more potential sources. These sources led to other database searches, such as PubMed, Taylor & Francis Online and Google Scholar. By doing this, I was able to find three papers focusing on the positive effects of online health information seeking. As the blog piece was written, further information was required to back up specific statements or ideas; these searches were conducted on Google or PubMed. For instance, “how many websites are there”, “prevalence of online health information seeking” and “risk of self-medicating”. Parameters were used to obtain articles published within the last 11 years to allow all information found to be more applicable to modern-day internet usage.
Positive effects on the patient
Websites provide the potential for patients to expand their knowledge and have a greater understanding about how a certain lifestyle can lead to health problems. In addition, they can help people understand how to treat or manage medical conditions and, overall, improve their safety. There are many individual cases where a patient has benefitted from using the internet. For instance, one article explains how a doctor misdiagnosed a patient with a rare form of cancer.4 After requesting a copy of her medical records, the patient was able to research the condition herself online and get a second opinion. After starting chemotherapy, it was found that she did not have cancer to begin with. Chemotherapy can produce many adverse side effects, such as anaemia, a weakened immune system and short-term memory problems. Therefore, this case is a clear example of how online health information seeking can help keep patients safe, as well as enhancing their understanding of certain illnesses.
A survey was completed by 154 respondents. Of these respondents, 89 individuals (58%) reported that they had used the internet to look for information on medical issues or health related concerns. Among these 89 respondents, 49 of them (55%) stated that the information they found on the internet changed the way they thought about their health. Furthermore, of these 49 participants, the most common change was increased interest in their own health (59%).5 This survey reflects the idea that the internet can encourage patients to change their health habits, as over half of the internet users agreed that the online information changed the way they viewed their health. However, the sample size for this research was relatively small, therefore, any definitive conclusions that are drawn from this are limited in strength. A larger scale study was conducted with 571 participants.6 In the survey, 67.1% of patients indicated that they had learned something new when using the internet to acquire health information. This data, again, manifests the positive effects of seeking health information online. Growth in knowledge allows patients to come to their consultations more prepared, with ideas, concerns and expectations at the ready, subsequently, allowing them to be more engaged and establish a more collaborative relationship with their doctor.7
Reading blogs or participating in online chatrooms can provide support, advice and comfort for patients, as some may find the experience-based information more reassuring and informative than clinical-based information. For example, depression blogs or chat rooms can provide a safe space for patients to anonymously share their feelings or useful self-care advice. Indeed, a study by Birgit Wagner et al found that the efficacy for internet-based intervention for depression was more long-term compared to regular face-to-face therapy.8 Sharing dietary advice is also a common online practice; however, there is the concern that the information given could be considered a ‘fad’ diet. A survey of 2000 people conducted by the British Dietetic Association found that 40% of people had tried or considered a fad diet.9 On the one hand, a fad diet may provide hope and comfort to people who are looking to lose weight. However, a major concern is that fad diets and other types of health advice given online may be lacking in strong clinical evidence. Consequently, the negative effects of online health information seeking can arise.
Negative effects on the patient
The constant expansion of the internet makes regulating websites a difficult task. For instance, researchers from the Journal of the American Osteopathic Association analysed online Wikipedia articles of the ten most costly conditions in the US.10 They discovered that 90% of the entries made statements that contradicted the latest medical research. Wikipedia is the fifth most popular website used globally, despite the establishment of its inaccuracy from this study.11 This demonstrates the dangers of seeking health information online; the popularity of a website could mistakenly be used as a measure for how trustworthy and accurate the information is, potentially leading to misunderstandings and confusion. Consequently, patient safety could be jeopardised.
Online health information seeking has the potential to escalate into cyberchondria. Derived from the term hypochondria, cyberchondria is the exacerbation of anxiety due to excessive or repeated searches online for health-related information.12 The Cyberchondria Severity Scale (CSS) is an assessment tool developed by Eoin McElroy and Mark Shevlin to measure the extremity of cyberchondria in patients.13 The scale defines cyberchondria with five key characteristics: “compulsion, distress, excessiveness, reassurance seeking and mistrust of medical professionals”. A 2009 study looked at the effect of online health information seeking on 515 survey participants.14 They found that 40% of participants said that their behaviour changes based on the health information they find online. Of these 40%, 61% said their searches for potentially serious conditions increased; this can be linked to the “compulsion”, “distress” and “excessiveness” described in the CSS. Furthermore, of the 40%, 62% said engagement with their physician increased, which can be linked with the “reassurance seeking” characteristic. However, the study did not find the respondents mistrusted the medical profession more. Despite this, and the fact that the survey takers had not been clinically diagnosed with cyberchondria, we can clearly see how their reported symptoms can potentially be linked to the condition. The anxiety from cyberchondria can potentially manifest as physical symptoms such as headaches, palpitations and breathing problems. Furthermore, studies have proven that stress-related anxiety causes the release of excess cortisol, which can weaken the immune system and cause sleep problems.15 These physical symptoms can potentially exacerbate a patient’s anxiety if they do not realise these symptoms are caused by their anxiety in the first place.
Searching health information online can lead to a self-diagnosis. This is a dangerous practice as patients may lack the clinical expertise to properly synthesise and critique information to formulate a correct diagnosis. A UK Digital Health Report revealed that 21.8% of people had chosen to self-diagnose themselves using search engines; this information was based off 61 million Google searches and a survey of 1013 adults.16 The data shows that the prevalence of self-diagnosing is relatively high, making the issue very important for doctors to address. An inaccurate diagnosis can lead to an incorrect course of self-treatment or medication that can put patient safety at risk. Possible risks include “incorrect self-diagnosis, delays in seeking medical advice when needed, infrequent but severe adverse reactions, dangerous drug interactions, incorrect manner of administration, incorrect dosage, incorrect choice of therapy, masking of a severe disease and risk of dependence and abuse”.17 Relating self-medication to the internet, buying medicines online can also jeopardise patient safety as drugs from unregistered websites might be expired, diluted or fake. According to the NHS, patients should ask for guidance about online drugs from a healthcare professional as it is crucial to know the “dosage, possible side effects, and any harmful interactions with other medication”.18
Effects on the doctor–patient relationship
What has been perceived as the ideal doctor–patient relationship has evolved significantly during the past 20 years. Previously, the doctor was held in a position of authority and dominance while the patient was expected to quietly comply. Presently, a more collaborative relationship is encouraged.19 The transactional analysis model by Eric Berne can be used to contextualise this change. Berne describes three ego states: parent, adult and child. The parent is authoritarian and controlling, the adult is balanced, and the child is conforming.20 Therefore, it is ideal for a doctor and patient to have an adult–adult relationship.
However, this balance may be disturbed when a patient has obtained health information online. The patient may be adamant that their self-diagnosis is correct. Therefore, they are inclined to take the parent role, potentially demanding unnecessary tests or treatment. This shift in authority can cause tension and conflict if the doctor attempts to reinstate the previous balance. A doctor trying to discourage a patient from dangerously self-medicating can also cause conflict. Conflicting opinions can waste valuable time during consultations. According to the British Medical Association, general practice appointments should last for only 15 minutes.21 A patient can also accumulate this time by asking unnecessary questions regarding what they have found online. If the doctor feels the need to rush on, the patient can feel ignored, which will further deteriorate the relationship.
On the other hand, the doctor–patient relationship may benefit from online health information seeking. With the growth of patient knowledge, a more collaborative relationship can be formed, which manifests the ideal adult–adult balance. For example, a quarter of respondents from a survey of 562 people agreed that searching health information online allowed them to communicate with their doctor as an equal.22 Moreover, if the patient feels anxious from what was discovered online, then reassurance from the doctor can establish trust and comfort between the doctor and patient.
Conclusion
The literature suggests that this ‘digitalisation’ of doctors will become an increasingly prevalent phenomenon as the internet, and global access to it, continues to expand. It is vital that both doctors and patients acknowledge the beneficial side to it. Seeking health information online encourages the emancipation of patients from their historically submissive role, thus encouraging an ideal, collaborative and equal doctor–patient relationship. Additionally, the internet can provide a degree of reassurance and comfort through blogs and chatrooms. Yet, its vastness can also become a hinderance due to the difficulty in regulating and controlling information. Therefore, it is important that a doctor can recognise and effectively manage any negative implications that may arise. For instance, a patient’s inability to distinguish between true, false or inaccurate information online can lead to self-diagnosing or the development/exacerbation of cyberchondria. Furthermore, a patient may be inclined to self-medicate their supposed condition. This increased patient independence not only jeopardises patient safety, but can also adversely affect the doctor–patient relationship. In summary, it is important that the doctor remains the preponderant source of clinical knowledge, as they have the required training and experience. However, a patient’s right to autonomy should still be acknowledged and respected.
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