Author: Nora DeSimone, Director of Patient Kindness at Mural Health

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<div class="text-style-super-quote">“You cannot do kindness too soon, for you never know how soon it will be too late.”</div>

<div class="text-style-quote-source">—Ralph Waldo Emerson</div>

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In 2023, a sponsor approached Mural Health to support their participants in a global study. They only needed payment support in select countries, so we asked why. Here was their answer:

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“We only pay patients in countries that require it. Our patients all have cancer. They are dying. They will do whatever we want. We don’t have to pay them.”

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Sit with that for a minute.

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Now, compare it to some of the experiences participants have shared with us:

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“It's a lot of money to save my life, for something I didn't choose."

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“The trial saved my life and is now a first-ever FDA approved treatment, which will go on to help other people with not just my cancer, but other cancers, but it has financially devastated me.”

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How does this make you feel? It made us feel angry, frustrated, and sad. Have we lost the human touch in clinical research? Have we forgotten what it means to be kind? What else is being swept under the rug?

In speaking to ~50 clinical trial participants and caretakers across various therapeutic areas, we found that the data for Oncology trials reflected this anecdotal statement:

• 65% of non-oncology trials have reimbursements versus only 23% of oncology trials.
• 52% of non-oncology trials pay stipends to participants versus 5% of oncology trials.

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We found ourselves jaded, and it sparked an internal conversation at Mural Health, one that may seem simple but is too often overlooked: How can we be kinder to participants and their caretakers?

This is how Mural Health’s Patient Kindness function came to be. After all, participants aren’t just “subjects” as they are often referred to in this industry; they are quite literally the living, breathing soul of clinical research. Without them, there would be no scientific progress. Showing kindness is the least we can do.

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The Patient Kindness Group at Mural Health

Patient Kindness at Mural Health began in early 2024 as a non-commercial initiative to deepen our understanding of the participant experience in clinical trials, truly listen to them, and show them sincere compassion and kindness.

With empathy and care, we seek out participants across the country, provide a listening ear through 1:1 conversations to discuss their daily struggles and challenges, get to know them beyond their health challenges, and offer them random acts of kindness that are tailored to what they love or what may put a smile on their face. We keep these conversations completely confidential, while harnessing the insights we glean to ensure we represent and support participants in our day-to-day work - and in our broader initiatives - with a deep understanding of their voice.

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Response from a participant:

“Thank you SO MUCH! What thoughtful gifts! … You really didn't need to do that but I very much appreciate it. I look forward to continuing our conversations and friendship. I'm really glad we met."

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We quickly learned that individuals in clinical trials often have unique needs that are not well-understood, and cannot be supported at scale. Some examples are:

• Without free lodging near their site, many participants would not be able to participate in a potentially life-saving trial. 
• Many patients (adult or pediatric) rely on the help of a caregiver, but not all trials take that into consideration.
• Many children are trying to balance their trial and schoolwork, to maintain some normalcy.
• Many adults are trying to balance the trial and their job to maintain their income and/or health insurance.
• Some trial sites do not make the appropriate accommodations for the specific disease area that they are studying. For example, there is often a lack of wheelchair accessible ramps, working elevators, or waiting room chairs for all body types.

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With this in mind, Mural Health created and launched a Patient Kindness white glove service for trial participants in Mural Link, with a dedicated point of contact who is familiar with each participant’s needs (and that of their families). This high touch, around-the-clock service allows participants and families to focus on what matters the most: the patient’s health and the trial itself. The dedicated POC is responsible for:

• Working with the travel concierge team to help coordinate all travel and accommodations on behalf of a participant and their caretaker(s)
• Escalating and ensuring special and/or necessary requests are met, so the participant or family is comfortable during trial visits
• Proactively checking in with participants and/or caretakers to anticipate needs or challenges before they arise, and listening to participants to hear feedback and ensure satisfaction
• Advocating on behalf of a participant or caretaker and acting as a liaison between the participant and the site/sponsor
• Answering or triaging questions from the participant or caretaker related to logistics, reimbursements, and more
• Offering an extra layer of authentic support, empathy, and care for participants in trials, customized to their needs (including sending acts of kindness if allowed and applicable)

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The Value of Patient Kindness

Research from The Journal of Surgical Research indicates that compassionate, patient-centered

care enhances patient satisfaction and adherence to medical treatment, leading to improved health outcomes. The same is true in the context of clinical trials, where deeper support can significantly improve study outcomes by helping maintain participant engagement and minimize the risk of drop-outs due to logistical or other non-clinical challenges.

This translates to direct value for sponsors and sites:

• Reduces site burden due to the enhanced support Patient Kindness offers, which helps address participant inquiries and streamline areas of escalation
• Increases trial diversity by helping retain patients from underrepresented groups in the trial, addressing their unique needs and offering ongoing support from a familiar and trusted point of contact
• Provides critical value in highly complex trials, involving intensive global travel, a global participant population, and fragile medical conditions
• Educates the sponsor about the needs of the trial population, helping with future trial design and management

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But most importantly, Patient Kindness allows us to live up to our mission at Mural Health: truly making it easier to be a clinical trial participant.

One of our favorite parts about Patient Kindness is the bonds we form with patients and their families. We have met intelligent, resilient people from all over the world. Some are patients fighting for their lives; others are recovering from that fight. Some are caretakers willing to drop everything to help a loved one or friend. Some are parents doing everything they can to advocate for and save their child. We try to spread kindness to the people we meet and put a smile on their face, even if it’s just for a moment.

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“I think what you are doing is amazing and will undoubtedly help many patients at a challenging and truly pivotal point in their lives!" - Clinical trial participant

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These interactions have reinforced the importance of listening. Patient Kindness is about making patients feel heard and easing as much of the burden that comes with participating in a trial as we can. We want patients and their families to be as safe and comfortable as possible throughout the trial experience.

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How can you apply kindness in your own trial as a sponsor or a site?

Kindness to participants is key. Here are simple but impactful ways to apply it:

• Refer to your participants as participants, not subjects.
• Make a case for paying participants and removing barriers in your organization. It’s the right thing to do for them, and for the success of your trial.
• Work with sites and vendors who share this mission, help you realize it, and can even educate you on potential blind spots.

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How can you support our Patient Kindness work?

We recently launched a survey for patients and caregivers who have participated in a clinical trial or are currently in one. The goal is to help us uncover the financial burden that comes with participation so we can better advocate for patients and their caregivers to be reimbursed fairly. If you or someone you know fits this criteria, please take or share our survey!