PMWC Intl.: Why is patient advocacy so important?
PMWC Intl.: What are some of the key examples that highlight the relevance of patient-advocacy?
PMWC Intl.: You together with Esther, your wife, founded Patient Power LLC. Can you tell us more about the mission of Patient Power? What is it that you exactly do and how do you help patients?
We provide patient-related, disease-specific, and other relevant information via different channels which includes social media, e-newsletters,and global live events. We also connect patients and their loved ones with leading researchers, medical experts, healthcare support personnel, as well as with other patients,thus enabling access to the latest news related to their health concerns. To summarize, we produce content that is timely, newsworthy, and actionable. This helps patients in discussions with their healthcare team to be informed about their own health condition and armed with the right questions to get the best possible answers, and therefore ultimately the best possible care.
We produce content with the patient in mind who does not have the medical background to understand the expert’s vocabulary, and we do this in multiple languages. We have long-standing relationships with many global Centers of Medical Excellence and bring the insights and knowledge of their top practitioners to people all over the world who may otherwise not have the opportunity to consult with these “superstars” of medicine.
PMWC Intl.: You get a lot of support from leading medical centers, either financially or by donating their medical expert’s time for your programs. What is the benefit to those hospitals from patient advocacy?
When a physician or researcher from one of these medical centers is featured in our program, they are reaching a self-selected audience of highly motivated patients who are seeking the best and most appropriate care they can get. This is great “PR” for patient recruitment – whether it is for specific treatments or clinical trials – for these centers. The medical experts we speak to get the benefit of broad exposure outside their own geography for consultation reach as well as practice building.Beyond that, a relationship with us also serves as a recruitment tool for the medical center by showcasing their faculty, their outreach, and their commitment to patient care.
PMWC Intl.: What are some of the key learnings you have gathered working as a patient advocate that you would like to share with the medical domain, the pharmaceutical industry and others?
Key learnings include:
- Patients and family members are increasingly driven to be more in control of their own healthcare journey. Those in the medical field have expertise and knowledge they should openly share to empower patients–be they internal or external patients. Today’s digital world makes this a lot easier.
- Those in the medical field should allocate more resources to having their knowledge and their products discussed by third parties or on third party platforms. Patients are looking for 360 degree discussions related to their conditions and channels owned by hospitals or pharmaceutical companies often turn out to be too fragmented, limited, not up-to-date, or have a credibility issue.
- Medical facilities should have a responsibility to train their staff to be open, upbeat, and transparent with parents and family members. In today’s day and age, there is an expectation that their staff is fully dedicated to helping patients get as accurate as possible information about their condition so they can be more in control.
PMWC Intl.: What are the biggest challenges of patient advocacy?
- Changing the antiquated presumption that doctors should make all treatment decisions without the input of the patient. Clearly with the advent of information access being as broad and deep as it is, patients want – and feel they deserve – to have a voice in the decision making process of their own care. We are making progress, but it is slow, and even slower overseas.
- Getting all the patient advocacy groups to collaborate for the greatest benefit for patients. Larger funding pots result in bigger accomplishments of patient empowerment. It is a challenge to get diverse, well-meaning groups together to combine forces to tackle bigger goals. Patient Power is working hard on a number of collaborative projects that break down these group-to-group walls.
- Avoid commercialism. Have the pharmaceutical industry push back on their agencies and avoid building expensive, narrowly focused, commercial websites, and instead rather support third party channels. The same applies to major hospitals.
- Non-pharma players in the field believe pharma is the only one who should support patient education.Medical device, diagnostic, and equipment companies should likewise step up and show commitment to patients and family members even though they do not sell directly to patients, as their products do affect patients’ lives. Furthermore, hospitals should start taking advantage of digital media to establish an ongoing connection between their experts and patients.
PMWC Intl.: Is there anything else you would like to share with us?
Session Chair Profile
M.S., Co-Founder & President, Patient Power LLC
Biography
Andrew is one of the best known cancer patient-advocates, leading Patient Power in the US and Europe. Since 1984, Andrew has been a pioneer in educational programs for patients and the people who care about them. In 1996 he became a patient himself, diagnosed with chronic lymphocytic leukemia. He was treated successfully in a phase II trial. In 2011 he was diagnosed with a second cancer, myelofibrosis, and takes an oral JAK2 inhibitor to control the disease. Andrew enjoys a normal life and continues to lead online and in person programs via patientpower.info that reach almost 100,000 patients each month. In total he has hosted more than 5,000 interview programs for patients. He is the author of the acclaimed book, “The Web-Savvy Patient.” A television journalist by training, Andrew has an undergraduate degree from UNC-Chapel Hill and a Masters in Journalism from Columbia.
Speaker Profile
MBA, Co-Founder/Chief Operating Officer, Patient Power LLC
Biography
Esther Schorr is co-founder and Chief Operating Officer of Patient Power, a leading online channel for cancer patients and family members. She has worked with her spouse, Andrew, on patient and family education projects for more than 30 years. She has supported him in his cancer journey since diagnosis in Seattle in April 1996. Esther is passionate about empowering “care partners” and is a strong believer that education leads to empowerment and better care. Most recently, she has been developing a Care Partner Center on the patientpower.info to help connect care partners with each other for support and information sharing, as well as surface resources to help care partners navigate their special role in the healthcare and advocacy journey. Esther’s experience as a business and marketing consultant and project manager spans high technology, finance, hospitality, not-for-profit, and health care sectors. Esther has an undergraduate degree in communications and an MBA, both from UCLA.
