Engaging Patients, Engaging the Public

Back in September 2012, Jane Griffiths, Ph.D., then company group chairman, Janssen Europe, Middle East and Africa, headed the report, Building Bridges, Building Trust, looking at how the pharma industry could better communicate the science behind its innovations in today’s society.

Soon after, Jane hosted a multi-stakeholder event on how the sector is viewed and to develop practical ideas to help increase trust. The participants agreed that it was the responsibility of all stakeholders to involve citizens more and to improve communication with the public on science and research, to advance the translation of “new knowledge”.

Recently, Pharm Exec caught up with Jane Griffiths, now Global Head of Actelion (the company was acquired by J&J’s Janssen in 2017), to hear her thoughts on where the industry reputation stands now.

PharmExec: Five years after the Building Bridges, Building Trust report, what has changed for pharma in the reputation stakes?

Jane Griffiths, Global Head, Actelion.

Jane Griffiths: There has definitely been progress in driving to build reputation within the industry over the last five years.  A number of steps have been taken since we last spoke. We were in the midst then of moving to more transparency in clinical trial data. For example, Johnson & Johnson (J&J) has opened up the Yale University Open Data Access (YODA) portal, where data can be accessed for legitimate scientific questions. And the industry is now into its third year of disclosing transfer-of-value payments made to physicians and thought leaders for their services to the industry, such as involvement in advisory boards, speaker panels, etc. These were areas where people thought that the industry needed to be more transparent and that is now happening. There is a greater focus, certainly at J&J and Janssen, on really putting patients at the very center of everything that we do. A few years ago, we asked ourselves, “Are we as patient-focused as we should be?” We looked into some of the things we were doing and we felt there could be some improvements. So, we’ve put a lot more emphasis on patient engagement and advocacy and now have a more cohesive global approach around the involvement of patients in a number of initiatives where the patient voice is important eg clinical trial design and patient reported outcomes. (Last year, J&J ranked #13 on Fortune magazine’s list of Most Admired Companies and took first place in the pharmaceutical category worldwide.)

However, there is still work to do on the reputation front. The industry plays an incredibly important role in people’s lives-for most people, there are few things more important than good health-and the pharmaceutical industry has been a major contributor to the increase in life expectancy since the early 1900s. And yet there is still this big disconnect between the reputation of the industry and those amazing steps forward that have been achieved in health and life expectancy. Having been in the industry a long time, I know the hearts of its workers are in the right place. What we need to work on is making sure other people see that we have the best of intentions for patients.

Do you think social media, in the last five or six years, has become an obstacle in how it can spread negative messages about the industry?

We should always be looking to use social media for the good, but we have been cautious about how we enter into online dialogue. Social media can serve some very important and constructive functions, such as educating people on health in general. We have to hold our heads above the more negative aspects of social media and continue to communicate the benefits that our industry and our company bring. It is about turning up the volume on some of the great work that we do.

(David Keown, Actelion’s global therapeutic area communication leader, pulmonary hypertension, adds: In the last five years, I’ve seen a transformation at J&J and across the industry in the use of social media. Companies have woken up to the fact that engaged employees have the capacity to be great ambassadors for the industry. You can see this illustrated by the retweets and shares on our company Twitter and LinkedIn profiles. To increase the wider impact of this employee advocacy, we should make more conscious efforts to expand our professional social media networks beyond our own industry spheres.)

Has the emphasis on pricing been too prominent in the reputation debate?

The whole pricing debate does detract from what the industry is really about, which is bringing good health and longevity to people through innovation. Healthcare costs are multifactorial; aging populations, infrastructure costs and increasing wage bills all contribute to increasing societal costs.  The industry needs to better articulate to the broader society that drug costs do not form the majority of healthcare costs. What I ask of my team is how we can partner with healthcare services in the future and have more collaborative relationships; we need to figure our way out of the maze of increasing costs, the increasing number of elderly people, and improve access for all to the incredible technologies that are coming through.

A recent challenge in the US has been that one or two outlier companies have raised the price of off-patent medicines by a huge margin, leading to a mistaken perception by some that this is standard industry practice.  At Janssen we have issued a transparency report on how we construct our pricing and what pricing increase levels we implement on an annual basis. By doing that, we and other big companies are being transparent about the way we approach pricing, and it illustrates that we are taking a responsible view of it. We cannot let the industry’s reputation be tainted by a very small minority of outlier companies.

How do you make your vision of a better industry reputation a reality?

Firstly, we must make sure our workforce is well equipped with the facts. In doing so they can enter informed discussions with key healthcare stakeholders and the broader public.

Secondly, we unite as an industry to clearly articulate the benefits we bring to society.

The recent EFPIA campaign "We won’t rest" exemplifies this and provides many examples of how the industry is working to address the huge remaining unmet needs in healthcare today. It has been viewed by millions of people around the world.

Thirdly, it’s clear that to make a real difference in healthcare we need dialogue and partnerships. We at Johnson & Johnson have numerous partnerships with academia, start-ups, other companies, Governments and NGO’s through our Innovation Centres, JLabs, Global Public Health Organisation and our Global Community Impact Group. We recognise the challenges faced by Governments and healthcare providers in the provision of healthcare to ageing populations and we want to be a strong partner in addressing them.

It’s also a question of pride. I’m extremely proud about what my company does and I’m not afraid to share that with people. But, as mentioned before, we can’t just be talking to each other about this. There should be a more vocal and explicit pride in what we do, not defensiveness. We should talk more about the value we bring.

Jane Griffiths’ “Seven goals for 2018 and beyond” can be accessed here.