Why is patient advocacy so important? Interview Q&A with the Schorrs

PMWC Intl.: Why is patient advocacy so important?”

Andrew Schorr: We are in an era of Precision Medicine, but sadly, if patients don’t ask, they too often don’t receive support. Patients now need to see themselves as consumers who must play an active role in their care, and that goes beyond any individual patient-doctor relationship. The patient’s loyalty must not be to a doctor or clinic, but to her-/himself with the single focus on getting well. Doctors are consultants which a patient can accept or reject until the patient feels confident they have found the right team.

PMWC Intl.: What are some of the key examples that highlight the relevance of patient-advocacy?

Andrew Schorr: There are many. Take for example myself: I would have undergone standard chemotherapy from my local oncologist and it may have resulted in a durable effect. He pooh-poohed me for getting a second opinion. I did it anyway which resulted in me participating in a groundbreaking clinical trial which eventually translated into a sixteen year remission in my case. There are many other patients that went the extra mile to get more precise testing and better care, and eventually ended up with life extending or life-saving results – longer lives with fewer side effects.

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?

Esther Schorr: The Patient Power’s mission is to provide ongoing patient care, partner education, and empowerment for selected serious conditions (primarily in cancer) using established as well as highly innovative approaches like video on demand, live video broadcasts for patients from medical conventions, interactive town hall meetings/broadcasts from major medical centers, and patient group online meet-up discussions with the overall goal to improve the health of patients. We support patients and their loved ones in getting the right information, at the right time, with the right medical team, and empower them to be active participants in their own healthcare decision process.

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?

Esther Schorr: Our relationships with top medical centers via our programs not only puts patients in touch with leading experts who practice at those institutions, it also raises broad awareness in the public about the expertise and services that these institutions offer.Furthermore, it also highlights research opportunities of these medical centers where patients can get involved in.

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?

Andrew Schorr:

Key learnings include:

  1. 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.
  2. 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.
  3. 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?

Esther Schorr: There are many challenges and we are working actively to overcome them:

  1. 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.
  2. 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.
  3. 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.
  4. 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?

Andrew Schorr: Many patients feel their needs have been overlooked by the medical system. Too often the current system seems to provide a cookie-cutter type treatment which does not take into account the patient’s fragile emotions, or her/his need for relevant and timely information, respect, and shared decision-making.