Pharmaceutical and medical device companies are increasingly looking to patient groups, and in particular those that maintain disease-specific registries rich with patient and genomic data, for assistance in the product development process. But if a new study is to be believed, they're going to need to do a lot more to win their trust and support.
The study (PDF), released on 14 January 2013 by Patient View Quarterly, looked at 600 "international, national and regional patient groups from 56 countries," the majority of which were in the EU.
Its finding showed that pharmaceutical companies have a long way to go to win the trust of the groups. Just 34% of the groups surveyed thought that the sector-not individual companies, per se-had an "excellent" or "good" reputational ranking in 2012. Patient View noted that a similar survey in 2011 of 500 patient groups found that 42% of groups thought of the pharmaceutical industry as "excellent" or "good."
Change: Not Always for the Better
Even those who thought that the industry was doing well may believe that it did worse in 2012 than it did in years prior. The survey noted that "40% of the 600 respondent patient groups state that the reputation of the pharma [sic] industry had declined during 2012."
Why the negative change? The survey noted a few reasons: perceptions that companies were profit-driven and did not price drugs fairly; a lack of industry transparency; poor management of adverse news (recalls, warnings, etc); and patient-centered strategies that were at times unclear or unhelpful and a lack of integrity.
The latter point may have a lot to do with record-setting fines. 2012 saw two of the top three fines levied against pharmaceutical companies (GlaxoSmithKline, $3 billion; Abbott, $1.5 billion), news about which was difficult to miss. Still, even those companies managed to be ranked 11th and sixth , respectively, in a ranking of 29 pharmaceutical companies. Topping the list were Novarti(first), Gilead Sciences (Tie-Second) and Pfizer (Tie-Second). At the bottom of the list were Merck Group (27th), Teva (28th) and Allergan (29th).
Those company-specific rankings were based on a number of factors, including perceptions of their patient strategies, quality of information provided to patients, record of patient safety, usefulness of products, transparency and integrity.
The data show that survey respondents generally had a firm opinion of the industry one way or the other. The 34% of respondents who though positively of the industry were countered by approximately 50% of respondents who thought poorly of industry when it came to fair pricing policies, transparency and ethical marketing practices.
One caveat: The majority of questions were worded in such a way as to lead to potentially imprecise results. "How do you think your organisation's members (or the people you represent) would rate ____," the survey asked. This could result in a particular survey respondent misconstruing the organization's views in a number of ways.