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mdtalkPatient ExperienceRare Disease Day

What putting patients first really looks like

By March 1, 2023No Comments
Tarquin smiling, text reads: patient care is not just about understanding it's about empathy

We’re proud to be a driving force in clinical trials, relentlessly pushing the industry towards adopting a patient-centric approach as standard. With ‘putting patients first’ as our mantra, we focus on creating remarkable patient experiences through our technology and services.

But what does ‘putting patients first’ mean, and how does it look in practice?

A simple Google search tells us what many in the clinical industry think ‘putting patients first’ means. The search is littered with phrases such as treatment guidelines, understanding goals, and quality of care — logistical matters that make practical care more patient-centric.

All this is important and valid, but at mdgroup, genuinely putting patients first is about so much more.

Patient care is not just about understanding; it’s about empathy.

We recently recorded a very special edition of our mdtalk series to mark Rare Disease Day. Our COO and host, LaQuinta Jernigan, was joined by Jennifer Kinnebrew, Shaniece Goodlow, and Maggie Settlemire. In the episode, these incredible women share their experiences of having children with rare diseases and discuss how we can advocate better care for everyone.

We all want the same things: easy trials, accurate results and, ultimately, health equity for all. So, what lessons can we learn from those at the very heart of the process — the patients and their families?

When working with families involved in clinical trials, we’re often at the mercy of trial frameworks that can last for months and even years. It could be so easy to see these patients and their families as pieces of data, or faceless trial participants. But this perception denies that these are families — just like ours — coping with daily physical and emotional pain, stress, and uncertainty in impossible situations.

Although the guests in our mdtalk special edition did discuss the logistical challenges of coping with a rare disease, such as geographical access to the most appropriate healthcare, negotiating the complications and nuances of [U.S.] health insurance, and supporting children with additional needs through the school system, the overwhelming message that came through for me, was the need for empathy; to listen, to support, to be part of the patient community and to act now.

At mdgroup, we’re leading a revolution in the clinical trials industry by taking a big step back from the day-to-day to genuinely understand our patients’ practical and emotional needs.

Emotional support

Although the Orphan Drug Act defines a rare disease as a disease or condition that impacts fewer than 200,000 people in the U.S., there are actually 300 million people with rare diseases worldwide, and 1 in 17 people will be affected by a rare disease at some point.

Yet Jennifer, Shaniece, and Maggie had all, at one point, felt completely alone. Being there for our trial patients, not just at the point of care but throughout the process, has to be prioritised.

We need to see a trial from the perspective of our patients. What feels like a small detail to a trial sponsor could be a huge emotional consideration for a family trying to navigate ‘normal family life’ while coping with a rare or serious illness.

Proactively and sensitively ensuring that trial options are discussed with families in advance, so the right implementation of their care — be it decentralised or at-site — can be agreed with them, not suggested to them or organised for them, supports a feeling of agency and inclusion in the process.


In our podcast, Shaniece says: “Community is everything! Connections promote greater understanding, help you find the support you need, and can act as advocates for you.”

All our mdtalk participants agreed that finding a community that understood what they were going through had been invaluable.

From Facebook communities of families with the same condition to the National Organisation of Rare Diseases, sources where our participants could access support and advice helped them enormously.

Indeed, Maggie says: “The importance of a community that understands you and has been through a similar experience cannot be understated here. Expanding your ‘village’ allows you to reach out for ideas, advice, and support to find shortcuts and save time.”

We all want to find solutions to the healthcare issues that our global rare disease community faces, so wouldn’t it be marvellous if the trial organisers were a proactive part of this community?

We know the most about trial logistics, care pathways, and what healthcare options exist for our patients, so let’s proactively share that information with the communities around the diseases we’re involved in. Case studies of efficacious trials shouldn’t just sit on a corporate website to help us sell our products and service to trial sponsors; why don’t we share the details with patient groups and Facebook communities to help them understand and make informed decisions about their options?

For me, sharing information isn’t just about the logistical aspects of the trial but also about sharing the patient’s data. We believe patients should have agency in their care, which extends to them being party to and involved in collecting and understanding their own data. If we really want engaged, motivated, and involved patients, let us open up their own data to them and work with them to understand it.

Sharing all knowledge freely supports a feeling of ‘being in it together’ and ultimately makes for more engaged and invested families.

It’s time to deliver a better – hybrid trial experience

So much of our latest mdtalk podcast emphasised how much of the industry is still operating in silos and seeing patients as research subjects – not as active and involved partners in their care.

Practically speaking, DCTs modify trials to meet the logistical needs of patients. Still, only by empathising with and sitting beside them as a true ally and advocating for their care can we create a trial experience that speaks to all their needs.

So let’s stop having the same conversations and start taking genuinely revolutionary action to listen to, focus on, and support the patient to better and more efficiently get cures into the hands of those suffering.

We’re all in this together. Patients, the clinical trials industry, and sponsors are all invested in establishing global health equity. So let’s prove we have each other’s backs, open our ears and hearts, work hard to understand each other, and lead with empathy.

I believe it’s not just the right practical decision but also the moral thing to do.

What do you think?

Join in the conversation over on LinkedIn or Twitter using the hashtag #mdtalk. You can also listen to the entire series of mdtalk by searching ‘mdtalk’ wherever you get your podcasts.

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