Online patient communities are dramatically changinghow patients engage with the healthcare community. In fact, more than 40% of patients say that information found via social media affects the way they deal with their health.
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Online patient communities have increased in popularity over the years as they provide a means for patients and their families to learn about an illness, seek support and connect with others—all outside of a doctor’s office. While online patient communities won’t replace healthcare professionals, they can be a valuable resource for people dealing with chronic health issues.
As a chief medical officer, I’ve seen firsthand how online patient communities can improve outcomes for those living with an illness, especially a chronic disease, like type 1 diabetes.
Through my work, I’ve seen four major benefits that I believe online patient communities provide:
1. Education and experience
In addition to regular care from a physician, online patient communities can serve as a source of education. If a patient has a specific question about their diagnosis or treatment, consulting with a trusted healthcare provider is best. However, there are some questions that may best be answered by fellow patients.
For example, in our type 1 community, we frequently see discussions online where people connect about tips such as packing insulin for a long trip or what adhesive tape they like to use to hold devices in place. These peer-to-peer discussions can be hugely beneficial to others in the community with similar questions or experiences.
Hearing from other patients on how they deal with day-to-day issues from a firsthand perspective can be incredibly valuable for those learning to live with their disease.
2.Resource/information for caregivers
Online patient communities can serve as an excellent resource for caregivers and family members, as well. Caregivers are often the front line of support for their loved one or patient. As advocates, caregivers require their own emotional care. Caregivers can use online patient communities to connect with others like them and to learn more about any logistical questions they may have (financial, living arrangements, legal and other advocacy concerns).
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Additionally, caregivers can experience their own emotional exhaustion. Being the primary caregiver for someone with a chronic health condition can take a physical and mental toll. Caregivers can turn to online patient communities for the encouragement they need to prevent emotional burnout.
3.Place for interaction
While face-to-face groups can be beneficial, they are only effective when someone is able to attend the meetings. Breaking across geographic and cultural barriers, online patient communities can let those living with a disease connect with others around the world. Our system, for example, provides a platform for individuals living with type 1 diabetes to engage with the larger community. On the system, patients can answer the “Question of the Day”—one question every day about life with the disease.
Our participants can answer the question from their perspective and review how others answered the question and what comments they may have contributed. Additionally, participants can join discussions in the community, pose their own questions, and participate in online research surveys, often driven by academic institutes or industry companies looking to understand more about the daily life experiences of those with type 1 diabetes.
Online patient communities can help accelerate treatment and improve outcomes. Online patient communities for diabetes, for example, aim to accelerate better treatments, therapies and research for type 1 diabetes through its network of patients, clinicians, researchers, pharmaceutical, device, education and outreach organizations all working together.
Online patient communities offer the opportunity to provide researchers with powerful real-world research data needed to understand unmet needs, design improved treatments and tools, and ultimately improve lives.
Online communities are not a substitute for real life interpersonal exchanges with healthcare providers, however, they do offer a unique experience that brings together people from all over the world. Online resources and connections of many kinds give us access to the experiences of others and a feeling of community.
For those facing the physical and lifestyle challenges of chronic health conditions I highly recommend online patient communities as an additional and valuable avenue of support.