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Turning the tide for rare disease

Rare Patient Voice: helping patients and caregivers share their voices

Guest blog by Melanie Havert, patient outreach manager, Rare Patient Voice

Rare Patient Voice: helping patients and caregivers share their voices and the importance of assisting with research
Melanie Havert

My name is Melanie Havert, and I am both a patient with chronic illness and a family caregiver of two loved ones who have been diagnosed with a rare genetic condition. Because of my personal medical diagnosis, as well as the diagnosis of the loved ones that I passionately care for, I have learned that major factors in our quality of life are access to care, medical devices and available medications. In the past, I’ve taken part in research opportunities, and participating in them brought me such peace in the present and hope for the future. You see, I have always understood the importance of assisting with research whenever possible, as it means that the conditions being researched are gaining attention from those who can make significant improvements in the lives of people living with a chronic condition. 

My personal interest and love of participating in research was so intense that I found a way to work within the research field and found myself working for a wonderful company called Rare Patient Voice (RPV). I’ve been fortunate enough to have held three positions within RPV, beginning as a patient advocate in 2017, (where I attended in-person events to speak with patients and caregivers face-to-face), moving up to the title of project manager in 2019, (where I worked hands-on in filling seats and organising studies), and now as the patient outreach manager for this incredible company. My current role involves working with the public to raise awareness of RPV and encouraging others to participate in the research for which we are recruiting. I am intensely passionate about advocacy, finding one’s voice and doing my personal part to help improve the lives of those affected by medical conditions. Being a part of the RPV team is, in my opinion, the greatest way that I can personally make a difference in the lives of others.

For those of you that are unfamiliar with RPV, I’d like to give a little background into what we do. Rare Patient Voice consists of caring and compassionate individuals working tirelessly to connect patients and caregivers with opportunities to voice their opinions through surveys, interviews, online communities and clinical trials, which in turn, assists researchers in improving medical products and services. Patients and their family caregivers are provided the opportunity to truly be heard by those striving to make advancements within their community; this gives researchers the opportunity to work on improving the lives of patients through their research findings. Those who enjoy participating in research opportunities are invited to join the RPV panel so that they can be involved in future research studies.

As a patient as well as a caregiver, I have found that advocacy is essential when living with a chronic condition. A large part of advocating for yourself and others begins with finding your voice and learning how to speak with others about your condition, your medical needs, your desires and your limits. Watching others grow in their ability and confidence to advocate for themselves truly is the most rewarding part of my job.

I am a connecting tie between the client or researcher and the patient or caregiver. I regularly reach out to non-panel members and work on gaining their trust so that they feel secure enough in RPV to honour us with their participation in the research that we assist our clients with. Being the connecting tie between patients and researchers in a digital world can sometimes be a bit difficult, as gaining trust is not always easy (which is entirely understandable, especially with all of the digital dangers we face in the world today). 

The patient outreach team and I have established healthy and trusting relationships with many patients, caregivers, support groups, advocacy groups and non-profits around the world. Many of these relationships have blossomed into referral partnerships that provide word-of-mouth recommendations to their community to join our panel. Many of RPV’s referral partners have participated in studies and now openly share study opportunities with their communities; some referral partners have never personally participated in a study, but they have knowledge and faith in what we do, and we have established a relationship based on trust.

I encourage (and appreciate) word-of-mouth referrals, as I feel that nothing speaks truer of legitimacy and authenticity of a company than a word-of-mouth recommendation. When others share about RPV, it means that more people are being reached, and more people will be heard in the researcher’s quest to improve the lives of those affected by health conditions. I thoroughly enjoy building lasting relationships with our partners and look forward to adding more to our ever-growing list, as it means that another community has a new opportunity to have their voice heard by researchers.

There are times that a client researcher will approach RPV with the need to speak with those who have been diagnosed with a condition for which we don’t have a large patient panel or many referral partners. In these cases, the outreach team and I reach out to new groups and organisations we find online, sending a friendly email and asking for a call to discuss what we do and giving the person on the other line an opportunity to ask questions and gain answers regarding the company and the services that we offer. This is helpful in establishing a connection to a new community of people to further aid in research opportunities. 

The RPV team and I hope to be able to make many more such connections so we can continue to build a strong panel of patients and caregivers representative of all conditions, throughout the world.

I’ve found that people respond most positively to authenticity, so I do my absolute best to be my authentic self with each interaction I have with others. My role as patient outreach manager is thoroughly enjoyable, as I interact with many people each day who may not have otherwise known that there are research opportunities available with a focus on the condition that they have.

Researchers are yearning to hear from those of us affected by rare and chronic illness; they want to know what it is like to live with our conditions, about our struggles, our victories, and our desires. It’s the patients (and their family caregivers) living each day with a condition who can share what works and what needs to be improved, and researchers have realised this. In my position, I seek out patients and caregivers who may not have known that there are researchers working to make a difference in their lives. 

Without hearing the first-hand knowledge that patients and caregivers have, research would be lacking. How would a company know what a community needs if they had not yet spoken with members of the community about their needs? It’s my honour to be able to connect patients and their family caregivers with researchers and companies who want and need their input.



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