Social Distancing? Not in Specialty Patient Support Communities

by Yishai Knobel,

Specialty patients’ success on treatment relies heavily on the care and attention they receive. Chronic conditions and complex treatment protocols require multiple layers of support to help patients stay on track and optimize their treatment outcomes. High-touch support is even more necessary in a global pandemic. But with mandatory and voluntary social distancing impacting all of our lives, access to this type of personalized support is harder than ever.

Every disease and treatment pathway is unique, as are the questions and concerns within each specialty patient population. Chat forums on web or mobile allow patients to seek answers and share experiences within a community, when very little physical community is available. Providing patients and caregivers with a discussion forum specific to their situation helps them feel less alone in their journey, and more connected to others in a similar situation.

Before the pandemic made physical meetings difficult, the medical care team provided support in areas of access, affordability, education and other specialty treatment or rare disease considerations. However, preparing a patient or caregiver for daily tasks is not easy, especially when experiences can vary widely between patients. Peer-to-peer community support helps by providing engagement with others going through similar journeys and by learning together as a group.

The power of community support is critical, especially when it comes to discussions around COVID-19. Specialty patients have had a wrench thrown into their already complex journeys, with fear and uncertainty elevated across patient populations, and those dealing with chronic diseases more stressed than ever. While healthcare providers are striving to ease those concerns, patients also want to understand and learn how their peers are approaching and handling this evolving situation.

Adapting community dialogue for COVID-19

Taking advantage of the increase in social media and mobile usage

With many communities on lockdown, the use of social media and mobile apps to stay connected has skyrocketed in recent weeks—so much that social media companies like Facebook are struggling to keep their services steady and reliable. In fact, the social media giant reported an increase of more than 50% in total messaging on its platform in March alone. 

Social media usage as a percentage of total mobile app usage among U.S. adults has seen a significant spike overall—from 20 percent in early March to 25 percent in mid-April. It’s likely that app usage will only continue to increase, as individuals and communities continue to rely on networking apps to stay connected during the slow re-opening of different parts of the economy.

Fortunately, the one place where social distancing is not needed is social platforms. And for specialty patients, it’s one place where they can continue to get encouragement and support, keeping them on treatment and staying as healthy as possible.

Helping the most vulnerable

HelpAround has several communities serving different treatments and diseases, all powered by our mobile app. In addition to the high level of peer support HelpAround typically sees across our treatment-specific community forums, we are also seeing increased communication and support around how to navigate life changes related to COVID-19. 

Several populations across the chronic disease spectrum have elevated risk associated with COVID-19. Many chronic conditions index towards older populations, and beyond that, some populations are immunocompromised, such as those with oncological or immunological diseases, transplants or other rare diseases. Within these groups, prevention from infection is top of mind.

As a result, HelpAround communities show marked increases in dialogue since COVID-19 took center stage. Since March, one of HelpAround’s patient communities has averaged 8 responses for each comment or question posted—one indicator of the increased levels of camaraderie we’ve seen across the board. CaredFor, an online platform for Addiction Treatment Centers to connect and engage their alumni, has similarly seen a 40 percent increase in app logins in March, along with a 200+ percent increase in private messages between users and 38 percent increase in post reactions and engagements.

Areas of Increased Dialogue

Beyond increased engagement, HelpAround is also seeing a couple trends in types of dialogue. In a community where treatment is conducted at home and ancillary supplies are required, patients and caregivers are offering tips on procuring supplies amongst each other. Some are even sharing supplies for emergency situations such as power outages. 

Another common discussion topic is how to modify your lifestyle to minimize exposure risk. Here, we see a lot of sharing of best practices for venturing into public spaces, or offering services that help you stay home. 

One growing trend is general encouragement. There is an increased sense of “our community is in this together,” and as a result, many community members are creating a much-needed sense of positivity. In one specialty patient community focused on a therapy that requires frequent trips to an infusion center, a patient hesitant to make the trip was encouraged by another who said,

“I pray that you and your family are doing well during this pandemic. Please be extra careful while at your treatment center.”

Another re-emphasized his thankfulness for the ability to pursue treatment at home:

“Hi guys, I am so glad that we are doing treatment at home, especially now with COVID-19 going on… Wish you all well, and be safe if you have to go out.”

Some of our communities have moderators to help guide discussions and respond to FAQs. HelpAround has found the moderator role to be very useful during these challenging times when additional uncertainty has been added. Forum moderators are able to guide patients to needed resources or additional support tools.

Lastly, the value of the peer support community is increasing in chats, as patients are talking about the positive impact on their lives provided by their patient community. This feedback is powerful because it encourages others to participate in the dialogue, further strengthening the impact and reach of the community.

What type of peer support makes sense for you?

Providing patients with mobile community support can be done using two approaches. 

One method is to provide a single community environment where any patient or caregiver can participate in the dialogue. A key benefit to this approach is visibility into many different patients’ perspectives. A common concern to this approach is adverse event identification and reporting. However, a moderator can help solve this. The role of a moderator is helpful in monitoring the community, driving patient engagement and acting as a resource. In the majority of the moderated communities HelpAround supports, the moderator has a clinical background. 

A more targeted approach to community support is peer-to-peer matching. Here, patients or caregivers are matched based on specified criteria instead of being in a single, large community,. This allows for patients to have a 1-on-1 dialogue with someone in a similar situation. Matching can be based on several factors: age, location, time on therapy or any other therapy-specific attribute. In some cases, new patients are matched with experienced patients, providing a mentor relationship in the critical first weeks of treatment.. 

What would work best for you? Leave your thoughts in the comments.