How can social media be used to understand patients’ needs when battling a rare disease?
Social media is recommended to help make the development process more efficient when it comes to rare and orphan drugs, as stated in a white paper released earlier this year. In January, the FDA revised guidance on the subject, which includes identifying patients with rare diseases for clinical trials. However, social media benefits patients, clinicians, and caregivers in many ways as well. These include learning about the disease burden, opinions, side effects, treatments, unmet needs, and misdiagnoses that patients endure.
What Matters Most to People with Rare Diseases?
Caring for those with rare diseases in itself presents a challenge, since these patients are geographically dispersed and infrequent. The fact that crucial clinical and medical information is highly limited and difficult to locate advances these challenges, causing delays in correct diagnoses and leading to misdiagnoses when there is not a high level of awareness among the medical community present.
What these patients need most is something to bring them closer virtually. This is where social media comes in.
Social Media in Healthcare
When patients are isolated, it is difficult to speak with others (fellow patients and providers alike) about their diseases. It’s vital for patients and their loved ones to find support and connect with others; this has naturally led to a vast number of patients turning to social media platforms for these connections. Researchers and clinicians can also gain valuable insight regarding overall patient experiences revealed via social media to help improve patient care.
The Patients
There are specific disease-oriented platforms that focus on patients with rare diseases, including Smart Patients, Inspire, and RareConnect. There are also numerous Facebook groups and disease-specific discussion boards online. The advice, support, information, and shared experiences can make all the difference in treatment, care, and overall quality of life for them.
Patients often share their entire experiences via social media, including pre-diagnosis and diagnosis information, treatments received, effectiveness of treatments, and more. All of this information opens the gateway for expanding everyone’s awareness of what these patients are enduring. When the patient experience is better understood it becomes more relevant, and effective treatments can be devised.
The Researchers
A great example of how these platforms help researchers understand patients’ needs better were two studies done via social media to understand the patient experiences of MDS and AML1 &2. Analysis of 1,443 posts from 220 patients to explore perspectives and unmet needs found that the patients encountered a frustrating lack of information on the condition in general, and also information about treatments.
The study enabled researchers to conclude that clinicians need to be more thorough and take more time in discussing these important issues with patients, helping them to make more effective decisions about their treatment.
How Does Social Media Aid Drug Research and Development?
Numerous studies have compared the use of traditional patient surveys with using social media forums as a source of information and data for research. Two recent studies3&4 both found that searching social media in order to gain patient perspectives on diseases is not only feasible, but very beneficial. Social media searches are gaining momentum as a preferred means of finding common themes, unique information, and more in pathology. These searches are useful as a preliminary research step (such as collecting information for discussion guides) and also as a supplement to research involving more traditional qualitative approaches.
The Benefits of Healthcare Social Media
As is often the case with rare and/or serious diseases, time is of the essence. When patients who are coping with rare diseases are geographically isolated, it can take extended amounts of time just to find people, communicate with them, and learn from them on a physical and personal level. Most patients don’t have years at their disposal while they wait for studies to be performed that hinge on collecting enough people to examine.
A distinct advantage of using social media is the short timeline in which things can happen.
Traditional patient surveys typically take several months to complete and oftentimes, a lack of patients interferes with the saturation of responses necessary to reach important conclusions. More patients are accessible via social media, since there is no slow-going complex interview or recruitment process. Furthermore, social media studies can collect data from larger sample sizes, ensuring that all common concepts are represented.
Are There Disadvantages to Using Social Media in Healthcare?
There is one main potential disadvantage, and that is the lack of research determining the extent of bias that may be present. Potential biases in traditional questionnaire-based studies have been well-documented, but since social media itself is relatively new as a data source, the potential for bias has not been established yet. That being said, online posts are unsolicited and are not responses to specific questions; this does make social media posts less prone to biases that are the cause of design and structure.
Other disadvantages could include the fact that small sample sizes could still be an issue, representativeness of data that is collected cannot always be assured, and patient privacy is crucial, and must be protected by de-identifying patients’ social media profiles.
Using social media in healthcare has the potential to improve the lives of those suffering not only from rare diseases, but from any disease or condition. Whether it’s finding and recruiting patients for research studies, giving caregivers a support group in which to confide, revealing how patients feel about their options, or sharing patient experiences and treatments with others, social media offers a number of advantages.
So much discussion and published material focuses on the scientific and medical perspectives of diseases, and social media opens the door to a more social and emotional point of view. This ultimately leads to a deeper understanding and representation of the patient perspective, resulting in better communication, more needs being met, and a better prioritization of treatments for those in need.
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