Working Together Wins The Day
CEO of patient platform is honored for her staunch commitment to collaboration
If the constant talk about collaboration reflects an awkward truth, it’s that pharma’s silos too often silence the patient voice and stymie progress. Today, Jen Horonjeff was named Most Valuable Patient Advocate for her efforts in breaking down these barriers — both in her personal and professional life — at eyeforpharma’s annual Philadelphia event.
She praised the Most Valuable Patient Advocate award for shining a light on the value that comes from collaborating with patients to co-create solutions, and for recognizing the efforts that are happening outside of the industry.
“It is such an honour to win an award like this at an organisation that notoriously highlights how pharmaceutical companies are bringing more patients into the conversation and are recognizing them for their efforts to help the industry to do better. Together we can make better products and services and I am honoured to be regarded as helping to facilitate that collaboration.”
In naming the initiative as the winner of the 2018 Most Valuable Patient Advocate award, the panel of expert judges — comprising patients, patient advocates, healthcare professionals and senior pharma executives — championed the company's enterprising strategy and the scale of what it has managed to achieve in such a short amount of time.
Horonjeff is the brainchild behind Saavy Cooperative, a patient-driven, patient-owned platform that provides a marketplace for patient insights. It connects professionals (academics, market researchers, product designers, startups, etc) with patients and loved ones, who are experts on their experiences. As a cooperative, the patients themselves can become user-owners of the platform.
“We saw in our own personal lives this disconnect between the industry side that does want to do right by these patient-centric solutions but just didn’t have access to patients, and didn’t know how to reach them, and patients that didn’t know anybody cared or listened to them. We are just trying to shorten the distance between the two sides, so they can effectively collaborate and co-create new solutions,” she says.
As a life-long patient advocate, she brings a breadth of experience to her role as CEO. She has long been a volunteer for the Arthritis Foundation and helped champion and set-up their transition (peds to adult care) programming, established their Young Adult Committee and last year established their Patient Leadership Council, so patients have a stronger voice in the organization.
She is a patient-centred outcomes researcher at Columbia University Medical Centre where her focus is on revising clinical trial core sets and clinical treatment guidelines to include outcomes that are relevant to the patient experience. These have been recognized and implemented in practice.
Horonjeff is also a Consumer Representative for FDA advisory committees. And in 2015, Horonjeff & her husband rode a tandem bicycle from NYC to Florida to raise funds and awareness for juvenile arthritis (which she has). Now through Savvy, Jen not only advocates for patients to be heard, but also advocates for best practices working with patients and making sure they are fairly valued for their invaluable contributions.
The other finalists for the Most Valuable Patient Advocate were:
Patient Voice Initiative
The Patient Voice Initiative’s (PVI) objective is to develop a framework to formally acknowledge, facilitate and incorporate input from patients and consumers into health decision-making in the HTA system, delivering benefits for patients, pharmaceutical companies, healthcare professionals and government.
Sarah Krug — CEO, CANCER101, Founder – Health Collaboratory, Executive Director – Society for Participatory Medicine
Krug’s patient advocacy takes many forms, including: amplifying the voice of the patient in the design, development and improvement of patient-centric innovations and solutions, including medicine development; empowering patients with the knowledge and skills to better partner with healthcare teams; and working with various healthcare partners to represent the patient advocacy world across various disease states.
Heidi Floyd — Executive Director, Pink Power Mom
As a former caregiver to a cancer patient and now a cancer patient herself, Heidi Floyd has had a lifetime of experience seeing the unaddressed needs in this community. The Pink Power Mom Network strives to connect, empower and support true changemakers in a specific breast cancer space – women diagnosed at a young age.
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