The relationship between industry and patient groups has undergone dramatic change in recent years, according to AbbVie general manager Kirsten O’Doherty.
The Medicines Australia Board member spoke with PharmaDispatch following publication of a new report - 'Corporate Reputation of Pharma in 2016 - The Patient Perspective'.
The report is based on a survey of 1,463 patient groups globally, of which 27 were in Australia, and ranks 47 companies across seven indicators: patient centricity; patient information; patient safety; useful products; transparency; integrity; and, effectiveness of patient-group relationships (new indicator).
The survey actually showed a deterioration in patient group perceptions of industry in 2016. It found 37.9 per cent of respondent patient groups thought industry had an "excellent" or "good" corporate reputation in 2016, down from 44.7 per cent in 2015.
The survey reveals perceptions of industry also declined across a range of other indicators.
Australian patient groups were amongst the most negative when it came to recognising industry for innovation. Only 44 per cent of Australian respondents said industry was 'excellent' or 'good' at innovation, equal with the Netherlands, and only ahead of New Zealand on 27 per cent.
AbbVie ranked second overall amongst companies. It ranked second across six of the seven indicators of corporate reputation and third for one, behind top ranked ViiV Healthcare and ahead of Novartis, Novo Nordisk and Gilead.
Big improvers in 2016 were Allergan (39 to 26), Shire (21 to 10), Amgen (26 to 19) and GSK (17 to 13).
According to Ms O’Doherty, all companies must be conscious of how patient groups experience and perceive the relationship with industry. While expressing disappointment over the year-on-year decline, she said it is important to consider the ongoing evolution of the relationship over a period of time.
"It has changed dramatically in recent years. Patients have always been our most important stakeholder group but we are much better now at working with health consumer organisations. They demand a say in decisions, they demand to be partners, and that is the way it should be.
"There has always been a challenge because we can't discuss or be seen to be promoting products, which is as it should be, but we can involve patients in key decisions around clinical trial design and materials. Five years ago you would develop something and present it to an HCO, not anymore, we have to involve them from the earliest stages."
While regulation and the Medicines Australia Code of Conduct prohibit companies from initiating discussions with patients about products, Ms O’Doherty says that does not prevent engagement on a particular disease, getting a better understanding of the challenges facing patients and their expectations.
"Of course we have to be careful, open and transparent, and we can engage in a way that maintains trust and integrity while avoiding anything that gives the impression of promoting product. This will always be a reality but the relationship should be about the disease - the whole patient - rather than just the treatment."
The AbbVie general manager says the company ranked well because it maintains a significant focus on working with patient groups and considers the relationship from a wider perspective than just the product.
"You really have to think about it that way," she told PharmaDispatch.
"We have patient relations teams and would never produce any materials without doing it as a co-creation with our key stakeholder group. As companies, we can tend to get very focussed on medicines, but patients have a much wider context when it comes to living with a disease. We have to be genuine in our commitment to engagement to make sure what we're doing reflects their reality."
She says one of the most positive developments has been the emergence of highly sophisticated patient groups. "They are more active, especially on digital platforms, more resourced and capable, even making submissions to the PBAC. This has been a remarkably positive development for patients, industry and even policy-makers. More active and involved patients obviously leads to better outcomes."