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Pam Cusick, Rare Patient Voice
Welcome back to our podcast, The Patient Speak, where we're combining the business and science innovation of accelerating the patient journey with what we need to hear from the patients themselves and when we listen to their voices.
And we have a great guest to help enlighten us in that area today, Pam Cusick, Senior Vice President of Rare Patient Voice, an organization that connects patients with opportunities to let their voices be heard.
In our conversation with Pam, she thinks that we need to hear how patients feel. The whole patient's experience and their whole journey.
Rare Patient Voice carries out interviews, studies, and focus groups that really help bring out the patient's voice on how they handle their day-to-day lives together with things overlooked like how they relate with their relatives and the impact the illness has on their everyday life.
She says that most times people focus on the treatment and cure. More often than not we overlook the impacts that a disease has on a patient's relationships and daily life.
Her primary focus is to connect patients and caregivers with all types of research opportunities which could be focus groups, interviews, surveys, clinical trials, and online communities in order to improve products or services that are being developed for them.
When they have studies to carry out, they invite patients to join in (and they pay them because patients need to be compensated for their time) because they are the experts in what they're talking about.
As we wrap up she shares that they have a wonderful patient advocacy team that:
- has connected with over 2800 referral partners around the world.
- They have over 100,000 patients and caregivers in over 750 conditions and we're in the US, Canada, the UK, Germany, France, Italy, Spain, Australia, and New Zealand.
In conclusion, our conversation reveals that the patients that share their experiences often make such a huge impact especially just to help ease the journey of a newly diagnosed patient and make their experience much better.
Pamela Cusick
Pamela's Website
Pamela on YouTube
@rarepatientvoice on Instagram
Pamela's Facebook page
If you’d like to read more about patient empowerment – along with the 83bar patient recruitment platform – go to www.83bar.com
BSB Media
BSB Media
View all episodes
By BSB MediaWelcome back to our podcast, The Patient Speak, where we're combining the business and science innovation of accelerating the patient journey with what we need to hear from the patients themselves and when we listen to their voices.
And we have a great guest to help enlighten us in that area today, Pam Cusick, Senior Vice President of Rare Patient Voice, an organization that connects patients with opportunities to let their voices be heard.
In our conversation with Pam, she thinks that we need to hear how patients feel. The whole patient's experience and their whole journey.
Rare Patient Voice carries out interviews, studies, and focus groups that really help bring out the patient's voice on how they handle their day-to-day lives together with things overlooked like how they relate with their relatives and the impact the illness has on their everyday life.
She says that most times people focus on the treatment and cure. More often than not we overlook the impacts that a disease has on a patient's relationships and daily life.
Her primary focus is to connect patients and caregivers with all types of research opportunities which could be focus groups, interviews, surveys, clinical trials, and online communities in order to improve products or services that are being developed for them.
When they have studies to carry out, they invite patients to join in (and they pay them because patients need to be compensated for their time) because they are the experts in what they're talking about.
As we wrap up she shares that they have a wonderful patient advocacy team that:
- has connected with over 2800 referral partners around the world.
- They have over 100,000 patients and caregivers in over 750 conditions and we're in the US, Canada, the UK, Germany, France, Italy, Spain, Australia, and New Zealand.
In conclusion, our conversation reveals that the patients that share their experiences often make such a huge impact especially just to help ease the journey of a newly diagnosed patient and make their experience much better.
Pamela Cusick
Pamela's Website
Pamela on YouTube
@rarepatientvoice on Instagram
Pamela's Facebook page
If you’d like to read more about patient empowerment – along with the 83bar patient recruitment platform – go to www.83bar.com
BSB Media
BSB Media