In this episode, our guest Mrs. Connie Lee Montgomery, a global patient advocate living with two rare diseases and three chronic conditions, talks about what it takes for healthcare and the pharmaceutical industry to truly listen to the people they serve. She brings three perspectives to the conversation: patient, carer for several family members, and retired occupational therapist.
Top 5 highlights from the conversation
1. It took around 30 years to be diagnosed
Factor VII deficiency is a rare condition that means the blood does not clot properly, and Connie believes it took around 30 years for hers to be diagnosed. She is candid about why: a lack of knowledge among clinicians, where she lived in the southeastern United States, her ethnicity, and professionals who did not take the time to understand her Gullah Geechee culture. Above all, she says, her whole person was never considered.
2. Listen to what people don’t say
Listening, for Connie, means paying attention to what people hold back as well as what they say, from body language to the pauses that come when a subject feels difficult because of cultural beliefs, faith or stigma. She suggests picturing the person in front of you as your own mother, father or loved one. Even when there is no answer to give, acknowledging what someone has shared builds what she calls “trust currency.”
3. Have somewhere to send people
Asking about someone’s life only helps if there is something ready to offer when they answer. Organisations should have referrals in place beforehand, she says, so that a person who mentions needing food, transport or help getting to appointments can be connected to real support, moving things “beyond gathering data and information to action.” Longer term, she wants ecosystems of care built around people, because “we are complex individuals with complex lives.”
4. Show up where communities are
In Connie’s view, companies can no longer come into communities to take information, or use people’s bodies for research, without first building relationships there. That means being visible at health fairs, faith buildings and Little League games, and involving patients and carers at the very start of any research or product development. It also means asking what surrounds a person, from nutritious food and public transport to whether there is family who can get them to a trial site.
5. The Rare Cares Collective
Connecting rare and ultra-rare communities locally, nationally and globally is the aim of The Rare Cares Collective, the organisation Connie has just founded. She points out that groups such as NORD in the United States and ORDI in India rarely talk to one another, and believes communication leads to connection, and connection to collaboration. Her ground rule for that work is to be “HOT”: honest, open and transparent.
About the Expert
Mrs. Connie Lee Montgomery is a retired occupational therapist, global patient advocate, and CEO and Founder of The Rare Cares Collective. She lives with factor VII deficiency, a rare bleeding disorder, and pemphigus vulgaris, a rare autoimmune disease, alongside three chronic conditions. Her three-decade fight to be seen, heard and understood led to her advocacy for bleeding disorders awareness and for better access to research and clinical trials for people with rare diseases. Drawing on her experience as a patient, carer and former healthcare professional, Connie is a keynote speaker, conference panellist, consultant and children’s author, and serves on global advisory boards.
“Receiving appropriate medical care is a human right.”
Find out more: https://connieleemontgomery.com/
Medical disclaimer
This content is for general information only and is not a substitute for professional medical advice. Always consult your GP or a qualified healthcare professional if you have any concerns about your health.