Pharmaceutical Industry Should Undergo Various Steps to Help Rebuild Public Trust

The pharmaceutical industry has been plagued by a lack of public trust, and various polls have showed mixed results concerning how the COVID-19 pandemic has impacted that. The pandemic has posed tremendous challenges for the industry, perhaps most significantly in developing, testing and delivering vaccines. But even though companies have brought vaccines to the market in record time, a lack of trust in the industry still exists, with many people — even health care workers themselves — declining to be vaccinated. However, pharma can take a variety of steps to help rebuild that trust, maintain industry sources.

According to Sarah Krug, patient advocate, founder of the Health Collaboratory and CEO of Cancer101, “trust is one of the most important building blocks in any relationship, whether it’s trust in a friend, a partner, a colleague and even your doctor, but trust is fragile. It takes time to build but seconds to break and an eternity to repair.”

In the 1960s, “about 75% of Americans had great confidence in our medical leaders, but unfortunately today, that percent has declined to 34%,” she said during a recent webinar hosted by Reuters Events in partnership with Accenture. “In comparison to other developed countries, here in the U.S., we’re less likely to trust our doctors, with about 25% expressing confidence in the health care system. We know that a lack of trust can make it less likely for a person to engage in healthy behaviors. It’s
one of the best predictors of whether a patient will follow a clinician’s advice, including screenings.

Source: Mistrust Has ‘Ripple Effect’

“Trust is the cornerstone of the interactions that a patient has with the health care system, and when trust is tarnished, it can lead to fewer patient-doctor interactions; it can lead to a lack of continuity in care, a reduction in the utilization of health care services,” she continued. “Mistrust can lead to skepticism and a lack of confidence that the health care system cares about me as a patient. And there’s a ripple effect of mistrust: It can lead to negative health outcomes, greatly affect medical innovation. It’s the fuel to health inequities. So there are extensive disparities in trust across socioeconomical and racial lines. Building trust among these vulnerable populations is imperative. So we have a lot of work to do as it relates to trust specific to the health care space.”

Whitney Baldwin, lead for Accenture’s Patient Experience Center of Excellence and also a speaker at the webinar, maintained that “COVID has really transformed the way people feel about their health care, and they are really looking to the health care ecosystem — whether it’s doctors, whether it’s pharmacies, whether it’s pharma, the government — and the delivery of the vaccines has really kind of changed the frame and the way that patients both expect what they’re going to get from the health care system, including pharma, and we’re seeing it live right now vis-a-vis the vaccines.”

Trust in the health care system, he pointed out, is critical now because “our ability to overcome this pandemic is largely driven by the fact that we need herd immunity of 75% to 80% of the population.” And while a Harris Poll in the U.S. showed there had been “a significant increase in people’s positive perception” of pharma from that of a year ago, “that’s not the same thing as trust.”

Even before the pandemic, building trust with patients was important, said Melissa Dupont, patient engagement lead at Sanofi, during the webinar, which was titled “Bridging the gap: Earn patients’ trust post-pandemic to improve health outcomes.” But COVID, she stated, prompted more dialogue around the issue and ways to address it. Pharma can help build trust through “communication and education, really ensuring that we’re building and sharing, especially in the R&D space, information around clinical trials, decision-making tools for our patients and our participants,” she said.

Accenture conducted a survey in December 2020 — after the vaccines had begun to launch — of 500 U.S. patients in multiple therapeutic areas. Responses to the question of which health care system entities patients trust the most revealed the following:

  • Health care provider: 58%
  • Pharmacy: 15%
  • Health insurance: 12%
  • Government: 10%
  • Pharmaceutical industry: 5%

Baldwin said he wasn’t surprised by providers receiving the highest ranking but was surprised that insurers came out above pharma. “I think some people in pharma are like, ‘Well, don’t they understand we’re providing life-saving medicines?’” he said. “The thing about trust is it’s an emotional component, and on the one hand, [patients] may recognize that they know these are life-saving medicines that they rely on, but at the same time, there are a lot of complex emotions that are going on, and I think you’re seeing that.”

In her work with patients, Dupont said she has found that when they make the decision to start a treatment or enter a clinical trial, providers are the main reason why. They also lean on their caregivers, family members and patient advocacy groups to make informed decisions. She also pointed out that insurers may have gotten higher marks because patients actually can reach people there and ask them questions. But in the pharma industry, “it’s hard maybe for a patient to actually talk with somebody because we do have policies and privacy laws in place.”

In response to the survey results, “You could say that this is disheartening [for pharma] in light of the vaccine delivery,” said Baldwin. “But at the same time, it sort of says, ‘This is the reality of where we are.’” He noted that other responses to the survey showed that “it’s not just about developing the vaccines; there are other things, other levers, that need to be understood and pulled in order to move the needle.”

The survey could reflect an overall mistrust within the health care system, said the speakers. “There are many touchpoints in health care that can tarnish trust,” asserted Krug. “With all the initial confusion around COVID-19, there’s been growing mistrust in science and whether it can be influenced and whether both the good and the bad are truly transparent.”

When people do not trust science, this “can threaten the patient-doctor relationship,” she said. “Team-based care has, at times, led to a lack of connection to any one person on the team as the patient bounces around in a noncoordinated system. We always say that every patient should have an ally on their care team that they can trust in a fragmented system, and sometimes a nonclinician or a nontraditional source of information can be the best place to help build that trust, especially as we move toward this trend of episodic care, where the sacred relationship between the patient and doctor is greatly affected.”

In addition, Krug pointed out, “trust in information, regardless of sector, is a growing issue. People don’t know where to go for credible information. We live in an era of information overload, and with access to the internet, there’s a lot of erroneous information out there that we have to sift through, but most people don’t have the skills to distinguish what’s credible and what’s not. And I think the COVID-19 pandemic and its ripple effect, it’s tarnished trust even more with the initial uncertainty and the conflicting information from authoritative sources.” For example, “people were questioning the CDC’s [i.e., Centers for Disease Control and Prevention] motives, and even now as data continues to unfold, many are skeptical about how transparent these organizations are with their data. Unfortunately, we’re in an industry where a misstep by one organization can affect trust across a particular sector.”

“Extensive skepticism” also exists around “who’s monitoring the data and how it’s being monitored, with Big Brother always watching,” added Krug. “Technology is outpacing security, privacy, reliability, and that can have a major impact on trust because oftentimes, there’s a lack of transparency in how information is being collected, detected and shared, and transparency goes above and beyond tucking legal terms that no one can understand into the terms and conditions in the privacy policies. In our work with patients, we also have them access the terms and conditions of various interventions. On average, 90% of what they read they don’t understand.”

When Accenture asked patients how COVID-19 had impacted their trust in pharma, it found the following:

  • Significantly increased: 13%
  • Moderately increased: 22%
  • No change: 45%
  • Moderately decreased: 11%
  • Significantly decreased: 9%

“I think the good news is it showed there was an increase in trust,” said Baldwin. That said, “I think many in pharma would say, ‘Well, we develop these vaccines, we’re saving lives, we’re here, we did it in record speed, why don’t you give us credit?’ And the reality was that they are giving a bit of credit, but they see it as kind of ‘That’s your job. That’s your job to develop the medicines,’ and, frankly, they would probably look and say, ‘Well, that’s why you earn so much money.’”

“Despite the fact that we’re in the midst of a debilitating pandemic that’s disrupted our lives substantially, there is widespread distrust in R&D efforts around COVID-19,” observed Krug, citing a survey that showed one-third of Americans and almost half of Blacks are not likely to get a vaccine. And a March survey found that “approximately 15% of American front-line health care workers have not been vaccinated for COVID-19 even though they’ve been among the first eligible to receive the treatment in those communities.”

Manufacturers’ reactions to the pandemic helped build trust, maintained Dupont. For example, “we didn’t stop any of our clinical trials. So in a way, [the pandemic] forced us in pharma to accelerate a little bit of innovation, meaning we found a way to get our treatments to patients. We found a way to quickly do virtual health visits that maybe we were slow to adopt earlier. We were able to ship meds directly to our patients’ homes and things like that without interruption.”

“It takes a lot of work to be a patient,” observed Baldwin. But with patients not visiting providers during the shutdown, this resulted in “a fundamental shift” of other health care stakeholders having to find a way to get to patients.

Krug asserted that “the only silver lining that came out of 2020 is that the term ‘clinical trial’ became a household name. It was the first time that many had been introduced to the world of clinical trials thanks to the media. Every media outlet was talking about the innovation race to the cure. It was the first time people understood they could potentially be part of saving the world.”

However, she revealed that terms such as “Operation Warp Speed” may have impacted a person’s decision to get the vaccine: “One of our assessments showed that the term ‘Operation Warp Speed’ actually led to low confidence in the COVID-19 vaccine because no one wants to be part of anything that potentially seems rushed. A connection to science fiction isn’t reassuring.”

Patients in the rare disease community also questioned drugmakers’ motivation for developing a vaccine, said Krug. From that perspective, “every company is chasing the cure because of how many people have COVID-19, and they came up with multiple treatments in record speed. What about me and my disease? All I ever hear is an average of 17 years from bench to bedside.”

“So it’s definitely an opportunity to provide more context and information to ensure this doesn’t turn into a dark cloud over time,” she stated.

The Accenture survey revealed the following responses to the question of what actions pharma CEOs can take in both the R&D and commercial settings to earn patients’ trust:

  • Lower drug prices: 83%
  • Publicly share clinical research data in a clear and transparent manner: 82%
  • Financially support access to treatment (e.g., transportation, childcare costs): 78%
  • Provide more educational resources to patients: 75%
  • Support government policies protecting patients’ rights and health: 74%
  • Fund organizations promoting community health and well-being: 73%
  • Conduct research aimed at understanding and reducing health disparities: 71%
  • Publicly share how patients’ perspectives are incorporated into the development of products and services: 71%
  • Increase diversity in clinical trials (e.g., race, gender): 69%
  • Improve patients’ experience with new technology: 64%
  • Increase diversity among company employees and partnering health care professionals: 63%

Lowering drug prices, said Baldwin, is not surprising. “But what’s more important is if you look across the board, it’s not just about developing more medicines.”

“I look at some of the things, whether it’s patient assistance or education, there are efforts there, but frankly, patients aren’t aware of them,” he said. “And there’s not enough attention and focus on, for example, financial, as well as other types of support that are needed now, particularly in this time of COVID. Things like sharing clinical trial transparency, we think we do it, but again, when I look at some of the portals that are about the clinical trials, frankly, I wouldn’t call them particularly patient centric. So I think this is this whole issue of there’s more than just the focus around medicines, if you will, and these are multipronged, multitrack types of things that pharma, I think, can and should elevate and do differently and better. And if done in an appropriate way, I think patients would respond.”

Krug agreed. “Transparency is the most disruptive innovation of the 21st century,” but more work is needed. “It’s great to see that data sharing has become an imperative for many, but we also need to take it one step further and ensure that people can understand what that data means within the context of their lives. You know, it’s up to us to translate health care speak. For many, health care is like a foreign flick, and we need to provide the subtitles.” One assessment her company conducted showed that while a negative test is good within health care terms, because of the use of “negative,” people thought that indicated a bad test result.

Krug said that many patients actually have asked whether pharma was funding the Krispy Kreme campaign to give free donuts to people who get a COVID vaccine. (It’s not.) “But what if pharma did something radical and partnered with a wellness company and with each vaccine gave out a free gym membership or a gift card where you could only purchase healthy foods based on the SKUs or something that demonstrated that pharma’s concerned about people before, during and after they’re ill?” she asked.

“And it infuriates me because I worked for a pharma for a decade,” she continued. “We did great work. All of you are doing phenomenal work, but it’s not reaching the average person affected by a condition. And so, there needs to be more transparency, even about all these wonderful things that you are doing because you’re not just all about the medication, but sometimes these patients don’t see that. So it’s imperative that we shift our mindsets from how do we convince people to trust us to how do we become more trustworthy over time?”

For more information, visit www.accenture.com/patientxlab. Contact Baldwin at Whitney.Baldwin@accenture.com.

Angela Maas

Angela has an extensive background of editing, reporting and writing for trade and consumer publications. She has written Radar on Specialty Pharmacy (formerly called Specialty Pharmacy News) since she joined AIS Health in 2005 and has broad knowledge of the various issues at play within the space. Before joining AIS Health, she was managing editor at Employee Benefit News and Employee Benefit News Canada and managing editor at HemAware (a hemophilia publication), Lupus Living and Momentum (a multiple sclerosis publication). She has a B.A. in English and an M.A. in British literature from Arizona State University.

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