At the heart of patient-centered clinical trials are mobile health nurses who bring care, comfort and clinical expertise directly into patients’ homes.
By delivering procedures with compassion and consistency, mobile health nurses ease the burden on patients and ensure high-quality data collection. Every in-home health visit is a careful balance of precision and empathy, demonstrating how patient-first approaches can make trials more accessible and improve retention.
For children and their families, the opportunity to take part in clinical research from home can help reduce the stress and disruption associated with frequent travel to clinical trial sites. By combining clinical expertise with a calm, compassionate approach, mobile health nurses help make participation more accessible while supporting patients and caregivers throughout their trial journey.
Meet mdgroup mobile health nurse Shelby
We spoke to Shelby Read, an experienced Registered Nurse with a background in neonatal intensive care, about her journey into mobile health nursing and what it means to support children and families through decentralized clinical trials.
From caring for critically ill newborns in the NICU to bringing clinical research into patients’ homes, Shelby shares her perspective on the importance of trust, continuity and family-centered care. She also explains how mobile health nurses help bridge the gap between patients and clinical research, making participation more manageable for families while supporting safe, high-quality care.
How did you know nursing was your calling?
“I have been a Registered Nurse for over eight years, with most of my experience spent providing bedside care in the NICU at one of Western Canada’s major children’s hospitals. I pursued nursing because I wanted a meaningful and rewarding career where I could make a positive impact on the lives of patients and their families. During nursing school, I quickly realized that neonatal care was the specialty that inspired me most.
One of the things I value most about nursing is that there is always something new to learn. Working in the NICU has challenged me to develop strong critical thinking skills and adapt quickly in a fast-paced, highly specialized environment. Throughout my career, I have attended high-risk deliveries, cared for critically ill newborns and their families, and taken on leadership roles within the unit.
I am proud to be part of this profession and to work alongside some of the brightest and most dedicated healthcare professionals. These experiences have shaped me both personally and professionally and continue to fuel my passion for providing compassionate, family-centered, evidence-based care.”
Finding new ways to support patients and families
“I have always been curious about exploring nursing beyond the bedside. In the NICU, we often care for infants and their families for months at a time, and when they leave our unit, I find myself wondering how they are doing and what their long-term outcomes look like. That curiosity about the bigger picture of patient care and outcomes is what initially drew me to clinical research.
The opportunity to become a mobile health nurse in clinical research came somewhat unexpectedly, but I am incredibly grateful that it did. I was approached based on my NICU experience and matched with a family whose infant was participating in a decentralized clinical trial. At the time, I knew very little about this area of nursing, but it immediately sparked my interest. It offered exactly what I had been looking for a chance to expand my nursing practice, support families in a different way, and contribute to research that has the potential to improve outcomes for future patients.
To another nurse, I would tell that mobile health is a really meaningful way to expand your practice beyond traditional clinical settings. It allows you to meet patients where they are, which can significantly reduce stress and barriers to care for families.
From my experience, it also offers a different kind of connection. You get to see patients in their own environment and build trust over time in a more personal and consistent way. It can be very rewarding to know that your presence is directly improving access to care and making participation in treatment or research more manageable for families.
Another aspect I really value is the level of autonomy in this role. It requires you to be organized, confident in your clinical judgment, and able to manage visits independently while still working closely with the broader study team.”
Why home visits can make clinical trials easier for families
“Caring for patients in their homes provides a very different perspective than caring for them in a hospital or clinic setting. In the home, you are entering their environment and seeing firsthand how they live, which allows you to build a unique level of trust and connection with patients and their families.
I have found that patients are often more relaxed and comfortable at home, which can make the experience less stressful, especially for children. It also gives me a greater appreciation for the day-to-day challenges families may face and helps me provide more personalized care. While the clinical responsibilities remain the same, the home setting allows for a more holistic view of the patient and creates opportunities for meaningful relationships that can be harder to develop in a traditional healthcare setting.
Preparing for a patient visit and staying organized comes down to establishing a consistent routine. The day before a scheduled visit, I confirm the appointment time with the family to ensure it still works for them and to address any questions they may have in advance.
Once the visit is confirmed, I prepare my supplies and equipment, making sure my visit bag is fully stocked with everything required for the study visit, including materials for vital signs, documentation, and medication preparation and administration. I also ensure that all devices are charged, calibrated if needed, and ready for use to avoid any delays during the visit.
On the day of the visit, I review the patient’s chart and study protocol beforehand so I am fully prepared for what is required. This helps me carry out the visit efficiently while maintaining accuracy and safety.
When I arrive in the home, I focus on creating a calm and respectful presence and answer any questions the family may have. I find that being organized, approachable, and transparent helps patients feel more comfortable in their own environment and supports a smooth and positive experience for both the patient and their family.
Following the visit, I review my supplies to ensure I have enough stock for upcoming visits. If anything needs to be replenished, I communicate with my Clinical Manager to arrange ordering as needed. mdgroup has consistently been very responsive, and any additional supplies are typically sent promptly when required.
I keep the patient experience at the center of my work by always thinking about what the visit feels like from the family’s perspective. Since I’m entering their home, I’m very mindful of being respectful of their space, their time, and their routines.
I also find it especially important to support not only the patients but their families or caregivers as well during trial visits when working with pediatric patients, where caregivers are deeply involved in every aspect of care. I support both the patient and their family by making sure they feel included, informed, and comfortable throughout the visit.
For the patient, I try to meet them where they are at in that moment and approach them in a calm, respectful way. I am mindful not to rush the interaction or make them feel pressured to participate. Instead, I take the time to build trust in an age-appropriate way, and move at a pace that helps reduce fear or stress.
For caregivers, I focus on clear communication and reassurance, making sure they understand each step of the process and feel comfortable asking questions. Overall, my goal is to create a supportive environment where both the patient and their family feel safe, respected, and at ease throughout the visit.”
Helping families take part in rare disease research
“The study I was hired by mdgroup to support is still ongoing, and I have been involved for almost a year now. The participant has a rare genetic enzyme deficiency that was previously managed primarily through symptom control.
However, this decentralized clinical trial provides access to an investigational drug focused on enzyme replacement therapy, which has the potential to significantly change the course of the disease rather than only manage symptoms. By delivering the study through home visits, the trial has greatly reduced the burden on the family. They are able to remain in their home environment and continue their daily lives without the need to uproot the whole family and relocate to the United States to access this potentially life-changing treatment.
I see my role as helping make clinical research feel more accessible and less intimidating for patients and their families by bringing it directly into their home. For many families, research can feel overwhelming or unfamiliar at first, and having a consistent healthcare professional in their space helps make the process feel more personal and easier to understand.
During visits, I focus on explaining what’s happening in a clear, straightforward way and answering questions as they come up. I also help make fulfilling study requirements into something that fits into their daily routine, which can make participation feel much more manageable.
At the same time, I act as a link between the family and the team, making sure communication flows both ways and that any concerns are addressed quickly. Overall, I feel like I help connect the clinical side of research with the real-life, lived experience of the families taking part in it.”
What happens during an in-home clinical trial visit?
“At the moment, I work on a specific clinical trial that involves a variety of nursing responsibilities, including patient assessments, vital sign collection, drug reconstitution, IM injections, and post-administration monitoring.
A key part of my role is ensuring that patients and their families feel comfortable and supported throughout the process. Because visits take place in the home, I have the opportunity to provide care in a familiar environment, which can help reduce stress and make participation in the study more convenient for families.
Patient safety is always my top priority. I carefully assess and monitor patients before, during, and after medication administration while ensuring all study protocols and documentation requirements are followed. Clear communication is also essential. I maintain regular contact with families, study teams, and other stakeholders to address questions, coordinate care, and ensure a safe and positive experience for everyone involved.”
Why continuity of care matters in pediatric clinical trials
“One of the most rewarding parts of my role is being able to bring clinical care directly into patients’ homes and seeing the difference it makes for families. Throughout my career, I’ve seen how much stress and disruption hospital visits can create, especially for children and their caregivers.
Being able to reduce that burden while still providing safe, high-quality care feels very meaningful. I especially value the continuity of care in a decentralized trial setting, where I can build rapport with families over time and support them through what is often a long and complex journey. Knowing that my role helps make participation in research more accessible and less disruptive is incredibly fulfilling.
I have also had moments where I felt my presence made a meaningful difference, particularly during times when families were experiencing anxiety or uncertainty about their baby’s diagnosis and treatment. In those situations, I have been able to serve as a consistent point of contact outside of the site, and a familiar presence throughout their participation in the study. By taking the time to listen, answer questions, and clearly explain each step of the process, I aim to help families feel more informed and supported.
While my home visits are usually based on a set routine, unexpected situations can arise that require flexibility. On one occasion during the winter, a severe snowstorm led to multiple flight cancellations, including the family’s travel to the research site for their scheduled visit. They were understandably anxious about how their baby would receive their medication on time and potentially missing a dose that week.
Although I was not originally scheduled to visit them that week, I was able to adjust my schedule on short notice to ensure the visit could still take place in the home. This allowed the dose to be administered safely and on time, despite the weather-related disruptions.
For the family, it provided reassurance during a very stressful situation. For me, it was a meaningful reminder of the importance of flexibility and responsiveness in this role, and how even small adjustments can have a significant impact on continuity of care and patient confidence.”
Why clinical trials need to fit into patients’ lives
“I see decentralized clinical trials continuing to grow as a way to make research more accessible and patient-centered. As technology improves and more studies shift toward hybrid or fully decentralized models, I think we’ll see a lot more flexibility in how and where patients can take part.
From my experience working in this space, I’ve seen that these studies can absolutely be carried out safely and successfully in the home environment when there are strong protocols in place and good collaboration between all parties involved.
Overall, I think decentralized trials are moving toward a model that better fits patients’ real lives. They’re more convenient and inclusive, while still maintaining high standards of safety and data quality. In the end, it means patients won’t have to choose between managing their daily lives and participating in potentially life-changing clinical trials.”
Supporting children and families through decentralized clinical trials
For children and families, taking part in a clinical trial can bring additional challenges. Frequent travel to research sites, long journeys and the disruption of appointments can add to the demands of managing a child’s care. By bringing clinical trial visits into the home, decentralized clinical services can help reduce these barriers and make participation more manageable for families.
At mdgroup, our mobile health nurses are at the heart of our patient-first approach to decentralized clinical trials. They bring clinical expertise, compassion and continuity of care directly to patients, helping ensure that children and their families feel supported throughout their trial journey.
As Shelby’s experience shows, mobile health nursing is about more than delivering clinical procedures. It is about building trust, supporting caregivers, adapting to each family’s needs and helping connect patients with the research that could change their lives. For families participating in pediatric and rare disease trials, that support can make a meaningful difference.
Our mobile health nurses go above and beyond to make clinical trial participation as safe, comfortable and accessible as possible. To learn more about the role of in-home nursing in supporting patients through clinical trials, read our previous blog featuring mdgroup mobile health nurse Rachel Jiang, How In-Home Nursing Supports Patients in Life-Changing Trials.
Learn more about mdgroup’s decentralized clinical services and how we can support your trial success.
