Who's afraid?

Just about everyone, it seems, is afraid of the big bad pharma wolf. This is neither new nor news, and attempts to improve this situation have done little to alter public distrust of anything the pharmaceutical industry says or does. But why? There is usually a public outcry if a new treatment is not made freely available to those who may benefit, but nowhere near the same level of support for medical research studies investigating those self-same treatments. Worse still is the morbid obsession with studies that go wrong. Remember Parexel's 'Elephant Man'?

Now that I've got my little rant over, it's time to take a closer look at what needs to be done to improve the status quo. After all, in the words of Cicero: "To disregard what the world thinks of us is not only arrogant but utterly shameless."

Perception is reality
Let's start by trying to gain a better understanding of corporate reputation and how it is affected by perception. In the article Lookin' good (Communiqué, Volume 25: January to June 2010), Ralph Sutton provides useful insights into this 'intangible' concept, and identifies four key stakeholder groups whose perception of your business is crucial: your customers, your community, the financial community and your employees. He encourages us to consider how these groups may perceive any action or activity, and to use the many media we have available to communicate tailored messages, with a view to addressing potential concerns and information needs. Good advice.

It's important to remember that people 'buy' with their emotions. Key elements in their purchasing decision are how trustworthy they believe the company to be, whether or not they feel the company offers quality (and value-for-money) products or services and whether or not they support its raison d'être. These factors affect how people interact with the company and are just as relevant when considering the interaction between patients and physicians as for the general consumer.

An ideal world
It would be nice to live in a world where facts and figures exert the greatest influence but we're only human and emotion plays a key role. Consequently, to help change perceptions and build reputations, we need to communicate clearly and far more regularly about pharma's initiatives, achievements and aspirations. Success will be measured in terms of the general public's acknowledgement and appreciation of the industry's contribution to society, as well as increased understanding of and support for pharma sponsored research and development.

Making this feat even more challenging is the fact that, on the good-bad-ugly reputation continuum, pharma is at the 'bad-ugly' end. We've got a lot of work to do just to clear pharma's bad name and this makes me, as a clinical trial recruitment specialist, wonder where to start. We need to change general perceptions about clinical trials and understand what motivates individual patient populations before we can hope to change behaviour and increase study participation. A good reputation will facilitate study site engagement, referral networks, advocacy liaison and even, in these days of patient empowerment, patient recruitment.

No news is not good news
Pharmaceutical companies are generally seen as 'corporate fat cats' who make money out of other people's misfortune. In an independent survey conducted last year, 75 per cent of respondents believed that profitability margins were either 'very excessive' or 'excessive'.

The media has fostered this perception with inflammatory headlines such as 'Do the drug companies take us all for mugs?', 'Do you want to be a guinea pig?' and 'Report reveals tricks of the pharmaceutical trade'. All of these 'bad news' articles appeared in high readership health, lifestyle and general news sections, while 'good news' stories — like 'Drug giant GlaxoSmithKline pledges cheap medicine for world's poor' — are relegated to the less well-read sections, such as business. Is it just me, or does the balance need to be redressed? And what are we doing to bring this about?

How often do you tell friends and relatives who are tut-tutting about the big bad pharma wolf to throw away everything in their medicine cabinet if they feel that strongly about it? Imagine the shock! Worse still, have you told them aspirin wouldn't be approved in today's regulatory environment? While this should make them feel better about more stringent safety testing for new medicines, my experience is that it just seems to add fuel to the 'guinea pig' fire.

Life imitates art
The theory that we adopt the beliefs, behaviours and ideals expressed in the art we admire holds true for the pharma industry's reputation too. Books and films like The Constant Gardener endorse and, for some, create negative perceptions, tarring the whole industry with one not-very-flattering brush. Similarly, mass media reporting on clinical trial participants who experience dreadful (albeit unforeseen) side effects are the stories that make it above the fold, lending credibility to already distorted views.

Positive coverage of medical advances tends to focus on pre-phase I or independent/single-centre research projects — those studies that do not require acknowledgement of big pharma's role. In the independent survey, 67 per cent of respondents believed the portrayal of the industry in the media to be 'accurate' or 'quite accurate'. The media itself has no duty to inform, therefore the onus is on industry to rise to the challenge — without straying outside regulations, of course.

This presents further challenges. In a report from the House of Commons Health Committee, one company was quoted as saying: "The majority of enquiries about medicines that come directly from patients and their carers cannot be fully answered because this would be construed as an illegal promotion of a prescription-only medicine to the public. At present patients can find out more information about the safe use of tamoxifen from the internet than they can from the company that discovered it."

Pharma's best kept secret
Although we should continue to engage with all stakeholders as part of a traditional communications strategy, we need to be brave and find new ways to dispel the big bad wolf myth. If clinical trials are a crucial part of a pharma company's success, they are also one of pharma's best kept secrets. The media rarely report the fact that there are many thousands of people taking part in clinical trials every day and millions who are benefitting from past research projects that wouldn't have been possible if it weren't for the people who agreed to take part. In addition, most people for whom clinical trial participation is an option are only likely to hear about it if they are already being treated at a participating site.

The most obvious solution for combatting this is to get people talking — asking questions and sharing experiences. A wonderful example of where this is already happening is the WhyDotPharma blog. As it says on the landing page: 'The internet holds the power to profoundly change the way healthcare is delivered. Millions of patients, caregivers and physicians turn to the Internet every day to look up the latest information on important health topics and find support from like-minded people.'

The speed at which the digital space is evolving means regulations are usually a couple of steps behind, so it's up to us healthcare communicators to help our clients navigate a true course. Our goal should be to increase the number of 'light bulb' moments like those described on WhyDotPharma.

Light bulb moments
The independent survey showed perceptions of the industry can be changed from negative to the polar opposite when they experience the effect of a medication (whether approved or investigational) on their own, or a loved one's, life. This makes sense: they (or someone they couldn't face being without) have been helped by healthcare teams using the products developed by the pharma industry. In fact, these people often become champions for the industry and speak the messages that we would love to get across on our clients' behalf.

One cancer patient's wife reported: "My views now are very different. I am happy to pay a premium for domestic everyday drugs if this puts money into R&D that develops new drugs to save lives — it's that simple. My husband is alive due to a drug developed in Japan, which is being tested to be sold here in Europe."

A point this reinforces is that most people start with a negative perception and yet in most cases they have no personal experience of the pharma industry at all, whether good or bad.

Nevertheless, even with personal experience, many people do not associate the drug that they rely on to treat their condition with the pharma industry; be it an OTC antihistamine (hayfever suffers, be grateful!) or a niche cancer treatment, for example, for HER2 +ve breast cancer. Many also don't have any idea of the costs associated with developing their medication and/or why generic products can be so much cheaper, but may not be exactly the same, so these points still need to be addressed.

Time for change
Having bewailed the sorry state of pharma's reputation and touched only briefly on opportunities to improve the situation, it needs to be said that the desired change of mindset is the responsibility of each and every pharma company — with the support of their respective agencies and consultancies. The status quo is just not good enough.

Without doubt many pharma companies have dedicated enormous amounts of time and money to corporate social responsibility initiatives. For example, the Abbott Fund has trained 10,500 health workers in HIV treatment in Tanzania, Novartis and the WHO have collaborated for the provision of free leprosy treatment and GSK has pledged to provide cheap medicines to the world's poorest countries. Unfortunately, many people will never know about this and other important work unless we do more to tell them about it.

The director of the third annual pharmaceutical industry responsibility and reputation event said: "The industry is too scared of being misrepresented and finds it safer to be quiet." More frequent communication about research and development activities could go a long way to improving the public's perception of pharma's intentions. Similarly, increased public interaction through patient advocacy groups and participation in public advisory committees would help raise the profile of pharma's contribution to new and improved medicines.

There is a tendency for pharma to shy away from public-targeted PR or to use it primarily for disease awareness campaigns such as pain management or glycaemic control, or for data/merger/acquisition announcements (often simply to meet their shareholder obligations). These communications are usually so carefully worded that they lack any emotion and are therefore unlikely to enhance the company's reputation. Consequently, this approach only supports the popular view that they are companies 'with something to hide'.

The true story
If a pharma company's reputation is defined by four key qualities — distinctiveness, authenticity, transparency and consistency — and its ability successfully to raise awareness of these qualities, are you communicating this in a way that will change public perception? We desperately need a change of mindset from fear of the 'big bad wolf' to a better understanding of the value the industry brings to society and the contribution clinical trials make to a better future for all. OK, it's no fairytale, but it's not a cautionary tale either.

The Author
Lynnette van Heerden is director of clinical trial services at Brandtectonics Access.

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