The rise of online social media and the related wave of people sharing experiences, advice and plans has had a huge impact on healthcare. Before social media, as the British Medical Journal points out, patients received advice and referrals from their private social networks — friends, family and their personal physicians. Now, robust social networks provide advice on care, reviews of physicians and methods and personal experience with a given condition.
These social networks are actively used by patients for education, medical care advice and psychological comfort. Patients with a cancer diagnosis, for example, might use social media to research care and symptoms. When undergoing treatment, they might compare the effects with other patients’ experiences.
They can receive valuable advice from other patients on self-care and what to expect in the wake of treatment. Patients with chronic conditions might use social media sites as a source of information on exercise, diet and medication. They might review and assess the care they receive.
Essentially, patient-centered social networking provides a wider universe of information and support than patients had access to prior to online social media.
The Growing Importance of Utilizing the Data
The increasing importance of patient-centered care — taking the patient’s needs and understanding into account — has made the personal stories and trends on social media ever more important to healthcare providers themselves.
Healthcare providers and researchers are interested in patients’ utilization of social media for two reasons. First, it offers a window on the world of the patient’s experience. As a result, healthcare providers can take patient experience into account. A practice, for example, might realize that they need abbreviated wait times or accelerated patient outreach after looking at patient reviews.
Second, there is a growing interest in using patient-centered social media as a web of data to be mined for research. Recently, for example, healthcare researchers in California began to utilize patient text messages and social media essays to examine the behavioral needs of Iraq and Afghanistan veterans. The aim is to better personalize their care. Treatment recommendations that take into account the mental state of these patients, for example, are much more likely to be followed.
The open-source health network PatientsLikeMe is working in tandem with researchers and patients to utilize its network as a real-time data source. Patients, for example, use diagnostic tests as self-care and share the results with researchers. This data provides patient-centered views and experiences that are vital if recommended care guidelines and treatment are to make optimal use of patient perspectives.
If the explosion of social media information for patients, doctors and researchers is highly beneficial to healthcare overall, it also comes with some challenges.
The prime challenge is the potential of patient privacy breaches. Although some patient-centered social media networks such as MedHelp have privacy firewalls built in, a great deal also takes place over the same social media networks on which people download their vacation pictures and access music: Facebook, Twitter and others.
Sharing a patient’s medical condition can have severe negative impacts. If potential employers know of a cancer diagnosis or a heart condition, for example, it may affect employment decisions. Even the employed could suffer repercussions, based on an employer’s perception of their being up to the job or assessments of health insurance costs for a given company.
Similarly, knowledge of a patient’s medical condition or prognosis might negatively impact their ability to get insurance, whether they are employed or not. It might also affect their insurance premiums.
One of the vexing aspects of privacy is that breaches can arise from patients, providers, researchers or from medical record systems themselves. A patient may post good news on Facebook, not anticipating that her status will be monitored by employers. A physician may tweet asking for information on an unusual case only to find that the very uniqueness of the case inadvertently reveals the patient’s identity. Collected research data and record systems might be subject to sophisticated data breaches.
The Shock of the New
Another challenge is the sheer newness of patient-centered social networking. Standards of access, care and privacy are all evolving. As a result, medical information professionals are urging that institutions provide clear guidelines, accountability and standards.
Given the evolving state of data use and access, though, it is likely that these guidelines, accountability and standards will all be evolving for some time to come. Healthcare professionals should make sure that their institutions have clear guidelines and that they incorporate those standards at all times.
Patient-centered social media is here to stay. It provides enormous benefits to patients, providers and researchers both for current and evolving care. At the same time, maintaining optimal patient privacy is a significant challenge, as is staying abreast of evolving standards. The impacts on the U.S. healthcare system are likely to be far-reaching for some time to come.
Megan Nichols is a science writer who enjoys writing about healthcare, psychology and other scientific fields of study. To learn about health topics, check out her blog or follow her on twitter.