The gap between perception and reality has important consequences for what we think true and the amount of trust we place in particular ideas, people and corporations.
It’s a notion that was explored in great detail in Ipsos’ 2016 survey, which covered 40 countries and saw over 27,000 interviews conducted. Summing up the study’s findings, Ipsos MORI’s chief executive officer Ben Page concluded: “People are massively wrong about lots of things.”
Page was speaking at Roche’s recent Future-proofing Healthcare: Truth Unspun event in London, where he shared his insights on how public perception, particularly where it concerns the life science industry, has changed over time.
He explained how another Ipsos MORI survey, this time carried out with online parenting community Mumsnet, found 91% of people in the UK still trust doctors. The UK’s National Health Service is, he noted, “like a religion in this country”, and indeed is trusted “a lot more” than science and biotech companies.
He then detailed an experiment Ipsos MORI carried out about communicating a medical diagnosis and options. They told people to imagine they had cancer and that their doctor had told them an operation was needed and that 90% of those that had the operation were still alive after five years. Some 60-70% of respondents answered they would definitely have the operation. However, when the same question was asked, but with a different wording – changing the statistics to ‘9% of people who have this operation aren’t alive after five years’, the proportion of people who said they would have the same operation halved.
“We have to know these biases. Is it fair to nurture people into the right decision? I would say yes. We assume as scientists we just tell people the truth and they will interpret it the same way, but actually, we’re now learning that doesn’t work.”
Pharma’s role
Presenting a pharma view at the debate was Roche UK’s medical director Dr Rav Seeruthun, who tackled questions regarding trust and big pharma. “Pharmaceutical companies ultimately make money from healthcare and that’s something that is often not talked about because it’s controversial. However, it’s really important we’re honest around this,” he admitted.
Thoughts on industry honesty then naturally sparked questions centring on AllTrials. The campaign group has been at the forefront of efforts to increase clinical trial transparency – through open publication – and a year ago revealed that around half of all trials run by pharma companies, universities and other major research sponsors remained unpublished.
Roche has a mixed background in this area. Its reticence over publishing clinical studies for its flu drug Tamiflu was one of the drivers behind the formation of AllTrials in 2013. More recently it was placed mid-table in an audit of 42 top manufacturers from the EU, US and Japan, which put it 21st out of 46 firms.
“We have been in conversation with AllTrials to make sure that transparency is available because it’s the way forward,” said Dr Seeruthun. “There is a link between transparency and trust, but the number of requests we’ve had from the public to access data is very limited due to complicated data sets. We need someone who can filter this data and translate it for patients, and I think this should be a healthcare professional.”
Ipsos MORI’s Page added: “The idea that trust is in an irrevocable decline is not true, but clearly there’s different levels of trust for different institutions. There are some challenges for big institutions, but from where we’re standing now, overall trust in scientists has risen in the last 30 or so years.” For the industry, pharmaceutical companies are currently seen as “not entirely selfless”, he said, with perhaps a measure of understatement.
Looking at this from a pharma point of view Seeruthun said: “As an industry, we’re not good at communicating and that’s why we’re here. There is, however, a trust relationship between government and pharma regarding the production of medicines, but the big problem we have is that pharma doesn’t talk directly to patients. We are a regulated industry, so therefore we have regulations set out by government, the EMA, self-regulations, etc, but many people don’t understand what that means. It’s a complicated trust relationship because ultimately we’re a business-to-business model and not a business-to-consumer one.”
Healthy distrust
With the introduction of personalised medicines, however, that might not necessarily be the case in the future.
“If you map a patient’s genome and check that you have the medication that’s specific to them then you’ve suddenly got patients talking to pharma companies. There’s a lot of work that needs to be done surrounding these advancements.”
Standing on the other side of the fence regarding the issue of trust is Dr Ali Parsa, founder and CEO of digital healthcare service Babylon Health. He told the event: “We talk about trusting doctors unquestionably, as if it’s a good thing. It’s not a good thing. Doctors don’t know the most cutting-edge advances in medicine. Last year alone, 11,000 papers were written on dermatology. How many HCPs have read even 110 of those?”
He sees the UK and other countries as being on “the verge of a massive technological disconnection. We’re about to create AI on a scale that we never thought was possible. What feeds it is data. And countries that manage to provide their companies with that data will be the winners of that. Britain is at the forefront of that. But if we don’t have access to that data because a small group says we shouldn’t, then what happens… I don’t think anyone understands the gravity of this.”
Parsa concluded: “There’s a fundamental difference in personal rights and collective data, what we really need is the collective data. There’s no such thing as one solution fits all, but we need to figure out what’s reasonable and acceptable and what is not.”
Building on this was Sharon Grant, the chair of the London-based ‘community interest company’ Public Voice, who said: “Distrust is a healthy thing from a patient point of view. The NHS was seen as a gift in the 50s, but it is now seen as an entitlement, and what was then a fairly passive patient is now seen as a consumer with associated rights. We’ve come a long way since then and so has the doctor’s role, particularly in terms of AI.”
The introduction of artificial intelligence to support healthcare professionals is becoming more common, with a variety of players competing for lucrative contracts to harness digital technology to assist doctors in their diagnosis, but for Grant it needs to go further than technology, to rework the now 70-year-old GP model that still places the individual GP as the ‘expert and the sole source of truth’.
“We need GPs that are interpreters of the facts, a filter at the interpersonal level, who are in a position to help patients understand the facts about their conditions and help them to make decisions about which treatment they should have. That’s a different kind of GP, and that needs to be incorporated in GP training as we go along.”
Roche’s Seeruthun agreed. “Human contact and emotional intelligence is really important,” he explained, “I haven’t heard of a computer that can hold my hand. It’s human contact that blends intelligence and compassion. And I don’t think you can do one without the other in today’s society.”