From patients to e-patients
Tracy Cheung, solicitor at Kennedys, looks at the challenges and benefits of patients researching health information online
The term e-patient may not be familiar to doctors – but chances are you have come across them. Widespread access to the internet and an abundance of health information has meant a shift from the traditional role of the unknowing, uncomplaining, passive patient to a new generation of active consumers of healthcare: e-patients.
An e-patient has been defined as a health consumer who uses the internet to gather information about a medical condition of particular interest to them, and who uses electronic communication tools in coping with medical conditions. The term encompasses both those who seek online guidance for their own ailments, and the friends and family members who go online on their behalf.
There are four categories of e-patients:
- The well (the lightest and least frequent users of online health resources)
- The newly-diagnosed (the heaviest and most intensive users of online health resources)
- The chronically ill (regular users of online resources to manage their illnesses and keep updated on their conditions)
- Their caregivers (usually family members).
E-patients use the internet in three different ways: firstly, to access content, secondly, to connect with others and, thirdly, to collaborate with others in ways that were never possible before.
The number of e-patients is growing and they are becoming increasingly active, demonstrating the power of the participatory medicine model of care in using online resources to prepare for, supplement and double-check the advice on diagnoses and treatment options provided by physicians. They compare treatments suggested by their physicians with other patients and compare their physicians with other providers. These e-patients communicate with their physicians empowered with knowledge to question, explore and even challenge their views and recommendations.
The internet has made possible additional avenues for communication and the widespread use of social media – blogs, internet forums, content forums (YouTube) and social networking sites (Facebook and LinkedIn) – has meant the wide dissemination of health information on a global basis.
Some e-patients, particularly those in the chronically ill category and care-givers, have become ‘consumer specialists’ of their own or family member’s condition. This is evidenced by a growing population of extremely knowledgeable and involved e-patients who go on to co-ordinate support groups, run chat sessions, and design and maintain websites.
There are many benefits in the ready access to health information online, including the ready access to often free online resources for patients worldwide, encouragement of patients to play an active role in their healthcare management and provision of emotional and practical support in coping with illnesses. In today’s time-pressured medical practices, physicians can make referrals to useful support groups and guidance in face-to-face or online support communities to mitigate the negative effects of this. These resources enable patients to gain valuable emotional support, sharing of experiences and practical advice from others living with the same ailments.
Despite the abundance of online health information and growing number of e-patients, the medical profession’s duties and standards remain unchanged. In fact, the need to keep up-to-date with the latest medical developments and literature is greater than ever, with knowledgeable e-patients eager to discuss and even question your advice on diagnoses and treatment options. However, the e-patient and wealth of data available cannot be a substitute for the physician’s professional opinion and experience. We see the need for better communications with e-patients to develop an understanding of their conditions/illnesses and sources of information they rely on.
Physicians should also note the variation in the quality and reliability of health information online, their relevance and the lack of mechanisms to control the quality of online information. Unlike traditional publications, such as medical journals, which allow readers to recognise the credentials of the author, target group of a document and intention behind the information, these may be lacking in many online resources e-patients turn to.
E-patients have become valuable healthcare resources and healthcare providers should recognise them as such. The sharing of information gathered by e-patients can supplement the professional guidance offered by physicians to improve the quality of healthcare services and the doctor– patient relationship.