Please login to the form below

Has the pandemic opened up a future of accelerated diagnosis and better care for rare disease patients?

The challenge with rare disease is in the name – it's rare, so awareness is limited and diagnosis hindered. Could a more virtual existence change this? A Medical Affairs viewpoint in this week's instalment of our Pharma and COVID-19 series by Rare Immunology Global Medical Lead Karen Cheng

Photo by Fabrizio Verrecchia on Unsplash

Moving to a virtual existence may have been a bit of a challenge (or, at the very least, an adaptation of sorts). But the potential impact of reaching wider audiences is huge, from accelerating diagnosis in rare disease to providing more regular care for patients who would normally struggle to access it, says Global Medical Lead Karen Cheng.

How has the current situation impacted your day-to-day role?

From a personal working team perspective, we've discovered new ways to do things remotely. I don't think it's majorly affected our ability to share our ideas and get insights from different countries and medical science liaison teams.

But it has forced us to be a little bit more active on remote methods. We were probably naive or maybe not experienced enough in doing virtual ad boards, virtual congress, engagement, virtual educational events. So this is a very fast and steep learning curve for all of us because we're having to adapt to all these virtual methods. Likewise, working with clinicians for things like webinars, there's definitely room for improvement for a lot of the technology and maybe perhaps having more dry runs with the whole speaker panel before the actual event. Because often you have only that tight 60 minutes or so, with 10 minutes for Q&A. And if you struggle a bit with technology in between you lose time or it gets very disruptive.

we have a very, very strong and very diligent generation of young investigators who often use these congresses to showcase some of their research and also to learn. I think this is missing.

What about the industry more broadly? Where has the impact been felt the most?

It's been difficult to push along with studies. You will see this everywhere, people in all sorts of indications and therapy areas are having trouble with clinical trials. This eventually could lead to delays in access to medicines for patients, especially for novel therapies.

Also, the ability to engage without being able to travel has been challenging. This week, for example, was the European Haematology Association Congress, and typically there's 25,000 people at one place with all the different companies there, you get the chance to interact with people at the symposia or the booths. You have face to face discussion at the posters. For us in the industry travelling to congresses, having the opportunity to meet people that we've been working with for years, it's always good to catch up face-to-face, we learn about the work they are doing, sometimes get new insights about patient management, and we don't have that now.

Also, the current specialists will retire in 10 years, and we have a very, very strong and very diligent generation of young investigators who often use these congresses to showcase some of their research and also to learn. I think this is missing. We try to do this on virtual platforms but it's not quite the same kind of exchange.

What are the top 2 benefits that, in your opinion, the pandemic has brought to the industry?

I've spoken a lot of other negatives so far. But I think we wouldn’t get to leverage the digital aspects as much, without having this crisis come to us. And now we're discovering that actually, a lot of things can be done online. When I say that we are still lagging a little bit behind perhaps in some of these virtual educational materials or sites and ways to do things virtually. I mean, sometimes I would have to say, we ignored the very untapped potential.

Typically if I was going to organise a preceptorship at an institution or a centre of excellence, I may not be able to invite more than 10 to 15 participants to come to such a small expert meeting. Part of the education is that we have maybe two or three patients there for examination and discussion of differential diagnosis, treatment and management options. And you don't want to have too many people in the room with that one patient.

more than 15 people can access [a virtual preceptorship] all at the same time, and this could have a massive impact in the diagnosis of rare disease

But now we could have such an educational event done online. Obviously, there will be a bit more investment going into it, we might have to send in a video crew to the hospital or get things pre-recorded. But it means that more than 15 people can access it all at the same time, and this could have a massive impact in the diagnosis of rare disease. Raising awareness through such platforms is definitely a very good opportunity.

There's obviously the cost factor as well, you're no longer having to fly out there and spend lots of money, and I personally feel we could use these resources for even more research and drug development. And I think we should continue to adopt these practices for rare diseases.

[telemedecine] saves a tremendous amount of time for patients, who in the US sometimes have to travel more than 3 hours to see a specialist.

Where do you see the Pharma industry in a year's time? Do you think there'll be a long lasting impact, whether that's positive or negative?

I think it's going to be positive. I think that in this journey of discovering, you know, remote ways of learning and communicating. A lot of physicians now are having to find different ways to keep in touch with their patients. I was on a patient association webinar the other day with a lot of physicians who see my high-risk, immunosupressed patients, they don’t expect them to come in unless it's an absolute emergency, but would like to keep an eye on their progress. And now they’ve found ways to do things remotely, they ask them to do certain things on video, can discuss things online, can talk about treatment plans – and because they know them well enough telemedicine really works for them. This saves a tremendous amount of time for patients, who in the US sometimes have to travel more than 3 hours to see a specialist.

23rd October 2020

Share

Tags

Company Details

Frontera Group

+44 (0) 207 780 7460

Contact Website

Address:
St. John’s House
54 St. John’s Square
London
EC1V 4JL

Latest content on this profile

The other side of … rheumatoid arthritis
For Georgie, patient activation fuelled her motivation to find life without pain. So when blood tests came back normal, she felt confident to pursue referral until RA was confirmed...
Frontera Group
Has the pandemic opened up a future of accelerated diagnosis and better care for rare disease patients?
The challenge with rare disease is in the name – it's rare, so awareness is limited and diagnosis hindered. Could a more virtual existence change this? A Medical Affairs viewpoint in this week's instalment of our Pharma and COVID-19 series by Rare Immunology Global Medical Lead Karen Cheng
Frontera Group
The other side of … blood cancer
To stay motivated for the fight, some patients need to feel like active players in the treatment journey, not passengers to every decision.
Frontera Group
Healthcare in a lockdown
Even if patients are getting enough care during the COVID-19 pandemic, are they getting the right care?
Frontera Group
The other side of … multiple sclerosis
No good comes from excluding patients from having a say in their own care. In fact, improving activation (& outcomes) demands it.
Frontera Group
The other side of … Crohn’s disease
What patients say is their truth about living with chronic conditions. “I want to believe in my doctor but I feel more comfortable getting my guidance elsewhere.”
Frontera Group