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Creating remarkable experiences for patients with rare diseases throughout the entire clinical journey

Posted
COVID-19

“We’re extremely passionate about the part we play in the patient journey, and we look forward to continuing to ensure patients and families with rare diseases can participate in clinical trials worldwide.”

The pandemic has created many challenges for patients taking part in clinical trials, especially those with rare diseases. 

The need for patients and their families to travel to and from clinical study sites, particularly those who live in remote places, has been a huge obstacle over the past 12 months. Some of these families require long-term stays in countries far from their own. For these patients, the decentralised study model is not always possible, yet the importance of continuing treatment is paramount. 

We caught up with Pam Seggie, Global Director of Travel Services at mdgroup to find out how she and her team have been navigating the travel restrictions imposed by the pandemic, and how they continue to deliver remarkable experiences for patients with rare diseases. 

Hi Pam! Tell us a bit about your role and responsibilities at mdgroup.

As the Global Director of Travel Services, I’m responsible for leading and developing the department. I ensure our experienced teams located in the UK, US and Asia understand the importance of maintaining exceptionally high levels of customer service at all times. 

We deal directly with patients and families taking part in clinical trials, so it’s vital the team asks the right questions and listens carefully. By doing so, we ensure all travel to and from appointments is as stress-free and streamlined as possible. 

I coach and support my team to help them deliver a remarkable service and support to patients and their families.  

What are you most passionate about in your role?

My passion lies with the patients and families taking part in clinical trials, and in helping to make a positive difference and improve their overall experience. This can only be done by taking time to understand their individual situations, the challenges they may have encountered in the past, and how we can help manage this for them while travelling. 

I’m proud to say all members of the team are not only highly experienced travel consultants, they also demonstrate empathy, patience, flexibility and genuinely care about making life better for each patient and their family – this is at the heart of what we do.   

What impact has the pandemic had on your team and your work?

Travel has always been a fast-paced industry. However, the pandemic has really brought new challenges. Particularly regarding border and country restrictions, as well as COVID testing and quarantine requirements, which can change overnight. This means the team is focused on checking all restrictions before arranging travel for every new appointment, and continuously reviewing the situation until a patient and their families are safely at their location . 

We have seen an increase in arranging travel for appointments from the patient’s home to site to remove the need for travelling on their own, as well as an increase in relocating families for several months to avoid back and forth travel and the stress this can create. 

In what ways have you had to innovate to continue to provide remarkable experiences for patients and their families?

We have to think outside of the box and look at how we can facilitate safe travel in as stress-free a way as possible. Communication is vital, and we always make sure the patient and their family has all of the information they need, and know they can ask any questions at any time. 

What has the impact been on patients with rare diseases?

Many patients and their families felt the pandemic would mean an end to their inclusion in a clinical trial and that travel would be impossible. They also had concerns about travelling when restrictions were lifted. Fortunately, as borders have opened up and travelling for medical reasons is permitted by many countries, we have been able to assist with travel. This has allowed many of our patients taking part in rare disease trials to continue attending their appointments safely. 

How have you and your team gone the extra mile for patients and their families with rare diseases?

We helped a family from India relocate to California, a family from Chile relocate to Spain and three families from Brazil move to the US, to name a few. We do our best to find accommodation that makes it feel like a ‘home from home’. 

We also assisted a family to return home from the US to China – at a time when the US / China relationship was particularly precarious. Our team in Singapore helped navigate the Chinese government App and remained in continuous contact with the family during quarantine on arrival in China until they arrived home safely to their remote village.

“The importance of understanding each individual patient and family is vital. We need to ask the right questions and listen, as well as be armed with knowledge and up-to-date information. We are here to alleviate any concerns that patients and their families may have, and do our best to put ourselves in their position.”

What extra considerations do you have to make for patients with rare diseases?

We talk to the patients to understand any challenges or concerns they have. We research as much as possible so we can get really clear on how we can help them. It could be they have special dietary requirements, medical equipment and supplies they need to take with them when travelling, or they may need a specific type of accommodation or hotel room type, or adapted vehicles for chauffeur rides. The key thing for us is the individual. Whatever they need, we do our best to provide. 

We show compassion and empathy at all times, we are here to help and support.


Think remarkable. Expect remarkable. BE remarkable.

We deliver remarkable patient experiences that improve clinical trial outcomes. 

We empower healthcare providers with next-generation care management tools and technologies. 

We help CROs deliver high-performance patient experience management, and support pharma / biotech to attract, engage, and maintain patient participation in clinical trials. 

Remarkable means the right people, the right technologies and the right systems to deliver the best possible outcomes for you, your patients, and your clinical trial. 

Let’s make your next study remarkable. Contact us now to discuss how.