Interview – THE KEY TO CLINICAL TRIAL ENROLLMENT? PATIENT AWARENESS, ONGOING EDUCATION & COLLABORATION – PATIENT POWER’s ESTHER SCHORR
Leading up to NextLevel Life Science’s 2nd Annual MedAffairs Leaders Forum USA 2018, we are conducting interviews with selected members of our prestigious speaker panel to learn more about their thoughts on this vital issue.
*Opinions below are those only of the individual and do not reflect upon corporate strategy or positioning.
For more information regarding NextLevel Life Science’s 2nd Annual MedAffairs Leaders Forum USA 2018 click here!
Esther Schorr, Co-Founder, Chief Marketing & Operations Officer, Patient Power
NextLevel: How would you describe the work that you do at Patient Power?
ES: I am the Chief Marketing & Operations Officer at Patient Power. We are a cancer media outlet and a patient relationship management company. We are a news channel for the latest information that patients and their loved ones need when they are dealing with a cancer diagnosis, faced with treatment decisions, and perhaps considering going into a clinical trial. I am also a care partner and business partner to my husband Andrew Schorr, who is a two-time cancer survivor. We both advocate globally about the importance of patients being empowered and educated to be actively involved with their own healthcare decisions by partnering with their medical team.
NextLevel: When did Patient Power start its work?
ES: Patient Power is the latest iteration of work that we have been doing in patient education since the mid-1980s. We started doing this kind of connection with and education of patients in 1984-85, even before we had a website. We were video producers. My husband was a news person and I was a communications and project manager. We have been very devoted to patient education all along.
NextLevel: In your experience, what kinds of strategies or channels are effective in raising awareness and educating patients about enrolling in clinical trials? How can pharma use these channels?
ES: Pharma needs to take a broader and more inclusive approach to patients. Patients really want to get well. The hope is that the first doctor they see can help them do that, but that doesn’t always happen. Patients often start out not knowing much and the idea of a clinical trial can be scary or uncomfortable. Pharma could benefit by actively investing in programs to help patients understand that medical progress is happening for their condition, and that there may be a trial which could help them - that might match up well with their diagnosis.
What pharma really needs to do is to see where patients in specific health conditions can be reached. For example, we have our information for patients organized by disease-specific communities, and there are disease-specific advocacy groups with some of these connections as well. Pharma could support ongoing education programs where trials are part of the discussion. When somebody is diagnosed, and they are told they need treatment, in the discussion about treatment, trials should be part of the conversation if it’s appropriate, because in reality a clinical trial is another treatment modality. Pharma needs to reach out to groups, whether it’s us, advocacy groups, or whoever it is that has a direct connection with patients, and work together to reach those groups of patients. Trials can be part of the discussion because it may be right for you or it may not be, but you should consider it. People just need awareness and education.
NextLevel: What are some of patients’ misconceptions about joining clinical trials? How can pharma reduce these misconceptions?
ES:Some patients and their families are afraid they might lose their relationship with their doctor if they go to a trial somewhere else. That’s not necessarily the case. Often it can be a trial where they are already being treated and if not, often the standing oncologist that has a relationship with the patient can be looped in and work in coordination with the trial site. It’s a misconception that patients have and that some of them worry about.
They also worry about experimental care being risky or that won’t be as good as standard care. In reality, the treatment, the monitoring, and the daily attention is really good in a trial setting. We know that from our own personal experience with my husband and from talking to many other trial participants.
Patients worry about the logistics and the expense of being in a trial. Some of that is realistic and I know many pharma companies do help with this or are working on how they can alleviate some of that by providing some support. If you have to go to a trial site, you might have to drive or fly there, take time off from work, make arrangements for childcare, and other inconveniences and expenditures. They also worry about being a guinea pig and being subjected to a lot of extra tests and clinic visits.
One other obstacle is that many of the existing informational resources for patients are not generally user friendly. There are a lot of new tools, apps, and sites for patients, but many patients don’t know they exist. There needs to be more education about the resources.
Frankly, patients are going to shy away from information that comes directly from pharmaceutical companies, in part due to current perceptions of the industry. Patients need information from an independent, third-party who has looked at the whole range of resources, the trials that are out there, and who has made some effort to help patients and their medical teams match with the right trial. They need to have a 360-degree view of what’s available, as do their doctors. Very often community doctors don’t know that there are trials that are right for their patients.
Centres of excellence, such as big medical universities and hospitals with medical centres where research is done are usually on top of what’s out there as far as clinical trials in their specialty. But if you are talking about the vast majority of community doctors then this is not the case. It’s not their fault because it’s virtually impossible to follow-up on every trial. It does put the onus on patients, however, to be more proactive - which is why they need education on how to do that.
NextLevel: How do you find patients view pharma companies, and what they can provide for their disease, in general?
ES: Most patients don’t have accurate knowledge about pharmaceutical companies. Very few patients and care partners know the range of things pharma is doing. Some patients may have heard about drug prices and have a concern about it, but most people don’t know the full scope of what the issues are nor do they fully understand the critical nature of the clinical trial process. The relationships most patients have are with their clinical team, not with the sponsor of a trial which is often a pharmaceutical company. Once somebody gets into a trial, and it starts working for them, then they become a little bit savvier and they understand that pharma is behind that, and that if pharma is not creating the drugs and the treatments and not doing the trials, then innovations and new treatments don’t happen.
For a lot of people, the view of pharma is not positive or negative, but there is a tint towards the negative now because of the kind of publicity that is going on. For example, it is simplistic to think that the problem of high drug prices solely falls on the makers of those drugs. The reality is there are many factors that go into paying for innovation. By the time drugs get to the patient as purchaser there have been a number of intermediaries that affect the end price.
A lot of patients don’t really know the full scope of what pharmaceutical companies do, but they should because that would make them feel more comfortable with the idea of being in a clinical trial. Clinical trials lead to new treatments and allow patients to truly get tomorrow’s treatment today.
NextLevel: Industry is moving towards patient-centricity. How do you envision the collaboration between patients and industry evolving in the near future?
ES: I see some of it already evolving, but it needs to continue. The industry really needs to design trials that have been designed for and with patients. Pharma companies are talking about trying to figure out and setup programs where they can bring patients in and say, “Ok, we are going to have a series of trials, what makes sense to you as a patient?” So that’s one thing.
The trials need to be more doable and more appealing. Just to give one example, if you are asking someone in a trial to drive 500 miles to a centre, be there for 6 hours, and then drive back and come back 2 days later that’s going to be difficult for most people. Could that same trial be done at a community clinic, or in a local medical centre with guidance from the key investigator? The protocols need to be simpler and obviously the financial and logistical support needs to be more available. Sometimes people choose not to be in a trial because they simply can’t afford to be out of work, or pay for the airplane rides and the hotels.
Also, there needs to be more collaborative education. Pharma can partner with 3rd parties, whether it’s us or advocacy groups. We can partner to craft and disseminate education about what a trial is, what would be expected, and target communication to the right patient populations.
We’ve started to think about and view patients as “investors.” Patients need transparency, sincerity, and inclusion in the planning of the experiences they will have. It is possible to get patients to seriously consider entering a trial, and help them understand the risks as well as the possible returns. If you’re more comfortable with what went into planning a trial and there’s transparency about the risks and the potential returns, you’re more likely to invest, meaning be in the trial.
A lot pharmaceutical companies are talking about patient activation. You can interpret that term a lot of ways. For pharma it means getting the patient on their team. Pharma wants patients as informed advocates for participating in getting the best treatment they can get, and it may be that it’s their drug. There’s a growing awareness that patients are a fundamental part of bringing successful treatments to market.
NextLevel: What are you looking forward to most about our event in Boston?
ES: I am really looking forward to engaging with medical affairs executives. They have a critical role in shaping the effectiveness of communication and transmitting information from the external stakeholders which we have been talking about – patients and their healthcare team. The work we do as patient educators and advocates gives us great insight about what those external stakeholders need. Getting in that dialogue with them will be very exciting and productive. Medical affairs sits right in the middle of what pharma can do and how it can be delivered effectively. I am really excited to be able to talk with them.