Keeping rare disease communities and trial participants engaged during the COVID-19 outbreak

It’s safe to say COVID-19 has disrupted all our lives and the work that we do. Research staff are working from home, clinical trials are being suspended or delayed, and patients taking part in studies are facing travel disruptions and potential lockdowns.

Earlier in March, the US FDA released guidance for running clinical trials during the outbreak, suggesting telephone appointments, at-home drug administration, and other alternatives to requiring patients to visit study sites in person. But since then, the COVID-19 response worldwide has been getting stricter, with many governments advising all non-essential workers to remain home – including in some cases research site staff. Lilly has stated it will delay starting new studies and pause enrolment in ongoing ones.

This disruption to clinical research will have knock-on effects on the development of treatments for rare diseases. To help mitigate this, we need to consider patients who are currently part of clinical trials and how we keep them engaged. We should also shift the focus to online patient communities and the value they can bring in terms of the sharing of real-world experience data.

Keeping patients engaged with clinical research

For patients who are part of an ongoing clinical trial, researchers will naturally have to consider any health impacts pausing or delaying the study will have, and act accordingly. And for patients newly enrolled to a trial, researchers will have to be prepared for any emerging patient anxiety or reluctance to take part, in light of changing circumstances they may not have anticipated when they first joined.

Keeping patients engaged with clinical research in the event of a trial delay is paramount. And doing so using only virtual means could be seen as challenging. In his Rare Opinion piece, our head of research & analysis, Pete Chan explored these challenges and some of the learnings from remote digital health studies, including the effectiveness of emails and text messages as engagement tools.

Some ways of keeping patients engaged digitally include: sending regular email updates on a clinical trial and the potential benefits the trial results could bring, and starting a private Facebook group where participants can ask questions and get notifications of any changes to the study.

Engaging with rare disease patient communities

The stay at home advice and government lockdowns could lead to people having more free time and an increase in digital device use. But it may also lead to less face time with their doctors and existing support network. People living with a rare disease may find themselves engaging more with online patient communities as a result. Companies like Raremark that host such communities become a useful resource for sharing tips and life hacks on how to cope during the crisis. For example, at Raremark we’ve learnt that our cystic fibrosis community are doing everything they can to protect themselves:

‘No visitors, hand gel at inside of front door, no clubs or activities, kids out of school’

‘I've been self-isolating for 11 days now.  I'm going to take a financial hit from my job, but I can't risk my health.’

We have also found a knowledge gap for some of our other community members:

‘Can't seem to get any info on whether there is a realist higher risk. But I have a cough so I'm take precautions and have been self-isolated since Friday.’

‘I probably need to get extra medication, so I won’t have to go into the hospital in case of a crisis. I’m not sure what to do.’

Our community managers are facilitating patient-to-patient experience sharing to give some ideas and reassurance to those isolated at home.

As time goes on, the digital behavior of the general public may shift, and we may find previously hard-to-reach patients becoming more vocal online. This could help us grow Raremark’s existing communities, as well as identify potential new ones. Ultimately, this could mean adding a new condition to our platform and inviting these hard-to-reach individuals to join and start sharing their experiences.  

The unique nature of each rare disease and the pathway to care make it difficult to understand the real patient journey. Having access to engaged rare disease communities who are willing to share their experiences can play a pivotal role in drug development and speeding access to treatments.

Get in touch

Interested in hearing more? Feel free to reach out to us, and we’ll make sure to get back to you as soon as possible.