In an earlier article, I’ve spoken about the power of Google and how it can benefit both patients and medical providers.  Through the power of the internet, advocates can help patients understand their diagnoses and connect them with easy-to-understand research and medical providers.

But this can also have another impact – patient groups can also be a resource for providers.

Creating Broader Connections

Recently, through my foundation, I received an email from a doctor within the United Kingdom. He had conducted a social media search and found us online and wanted to connect about a TAPS case they currently had in their hospital.

Emails were exchanged, and I was able to share information and papers on TAPS that we had. I was also able to connect this doctor with a leading researcher in the field.

An advantage to good patient advocacy groups is that we actively look for new information on our disease. We quite often have built relationships with the leading researchers in our field.  To advocate for ourselves, we seek new knowledge and contact experts in our area to strengthen our cases. Information is limited within the rare disease community, so patient advocacy groups will cast a wide net to gather as many experts as possible.

The information these groups hold can benefit patients but is also a valuable resource for doctors, researchers, and other experts wanting to expand their networks.

Accessing Patient Perspectives

Another valuable contribution advocacy groups can give to providers is valuable patient feedback and insights that may not be available openly.

Patients can feel isolated and confused by a rare diagnosis. They may not be able to communicate this openly because they are overwhelmed.  There is so much information to take in, and it can feel like you are bombarded with jargon.

Connecting with a patient group can help raise awareness of the patient’s emotions and perhaps prompt them to access resources pre-emptively, like counseling.  This is important when the patient is still actively processing a diagnosis. The advocacy group can think outside of the medical box and instead focus on the patient’s needs.

Participation In Knowledge Expansion

From the connection with the hospital came a unique experience – being invited to participate in a grand round with experts and the care team.

A grand round is a learning moment for medical teams. It is used with challenging or unusual cases to expand the existing knowledge of the group. It is often also a time when experts are invited to discuss the matter and provide valuable insights into the patient’s ongoing care and future moments.

The advocacy group connects the team with the relevant expert, who added extensive and valuable insights into the case.  An evidence-based discussion around the management and diagnostic testing needed for the patients followed, and essential new diagnostic criteria and long-term follow-ups were brought to attention.  This meant that current and future TAPS patients could benefit from knowledge and experience sharing within this hospital.

But also, it brought a valuable secondary insight – that of a patient. A diagnosis often focuses on the medical side but can lose vision of the personal side and the human impact.

In this case, premature delivery and a rare disease diagnosis can be quite a significant emotional time for parents. It can be overwhelming and challenging. A patient advocate can offer a different perspective that can help medical teams prepare and anticipate future challenges. This, in turn, can help patients as resources are made available earlier and to help them.

Advocacy Groups As Connectors

Advocacy groups can be a fantastic resource for patients – bringing time, information, connection, and the human touch that rare disease patients crave when dealing with a difficult diagnosis.

These groups are built from a passionate desire to connect people and research. They often have the resources medical teams may need to build on their knowledge.

A good advocacy group stays up to date with research. It connects with experts to build on their resources, especially rare diseases, where the information is constantly evolving and changing. They connect with the experts in their field and build critical databases of research professionals with relevant expertise.

Patient networks and advocacy groups are an underappreciated resource.  They play a vital role in raising awareness of rare diseases. They can be a helpful tool for medical teams in providing access to resources.

It’s time to change the perceptions of patient advocacy groups and recognize them for the vital roles they play – especially in rare disease research. They build bridges between patients and researchers and also play a critical role in connecting professionals. Patient advocates play a crucial role in the future of rare diseases; it’s time to start utilizing them and working with them to improve patient outcomes and get the patient’s perspective.

This article would not be possible without the incredible support of the patron of the TAPS Support Foundation, Prof. Dr. Enrico Lopriore, and our advisors, Dr. Femke Slaghekke, Dr. Joanne Verweij, and Dr. Lisanne Tollenaar and their willingness to work alongside our patient advocacy group to share knowledge and raise awareness of TAPS. 

But my heartfelt gratitude goes out to Dr. Narasimha Rao, who put his faith in Google and found us and connected with us to expand his network and knowledge on TAPS.  You are the inspiration behind this article and have helped me prove that advocacy groups can work alongside professionals to create better patient outcomes.

My thanks also extend to Dr. Annie John, who created an excellent, informative presentation to a group of consultants, trainee doctors, and specialist nurses and helped educate and inform them on our rare disease. To this amazing group of doctors, I hope that I helped you see things from the patient’s perspective and that not all advocacy groups are alike. We are passionate, but we want to work with you.

But, I dedicate this article to the parents of the TAPS twins in Dr. Rao’s hospital. I wish you the best possible long-term outcomes; I hope that we have helped make a positive impact on your babies’ care and know that we can support you in your TAPS journey.