Five years ago the director-general of the World Health Organization Margaret Chan was moved to remind health officials that they should “never forget the people”.
Addressing the Sixty-fourth World Health Assembly in Geneva she said: “All of our debates and discussions have meaning only when they improve the health of people and relieve their suffering.”
Her comments in 2011 could just as easily be directed at the pharmaceutical industry – even more when you consider her comment that public health is “operating in a world of enormous and constantly changing complexity”.
Echoes of the ‘patients are at the heart of everything we do’ mantra that is popular within many pharma companies can also be seen in a variety of those charged with healthcare and its effective provision. For healthcare technology assessment bodies like NICE in the UK, or regulators like Sweden’s Läkemedelsverket (Medicinal Products Agency), for example, efforts to engage with patients and listen to the patient voice have been underway for some time.
Most recently the European Medicines Agency raised its expectations of pharmaceutical companies, calling for closer integration of patients’ views when it issued new guidance last month on the use of patient-reported outcomes (PROMs) in clinical trials of cancer medicines. As it did so, the European regulator said the guidance was an acknowledgement of “the importance of bringing the perspectives of patients on their disease and the treatment they receive to the assessment of benefits and risks of cancer medicines”.
As the EMA noted, PROMs “include any data directly reported by a patient that is based on his or her perception of a disease and its treatment”. This could be information on an individual’s quality of life, symptoms, treatment adherence or satisfaction with care. “Quality of life during disease and treatment is a personal perspective and may vary from person to person but is possible to be captured using well-established methods,” the EMA said.
Our debates and discussions have meaning only when they improve the health of people and relieve their suffering
Moving down the road
Pharma itself is on this journey, though not progressing quite as quickly as its patient-centricity rhetoric would suggest. Certainly, a decade ago the industry was avowedly more disease-focused and product-focused, but elements of what is now considered a patient-centric approach have always been in evidence. (Arguably, the best starting point for any pharma patient-centric approach is to develop the best medicines it can, though clearly that is no longer the absolute endpoint, with access and pricing just some of the considerations in play.)
“When I think about patient-centricity and the focus on patients, it’s not a new concept particularly,” Lilly president for Europe and Canada Andrew Hotchkiss said at the recent eyeforpharma conference in Barcelona. “I joined Lilly 30 years ago, and I still remember when I first joined the training course and getting a presentation about the history of our company.
“This year we celebrate 140 years of existence as an independent company – and our company was founded by a pharmacist who was frustrated at the time that medicines were not made with enough quality and not always getting a good result for patients, and that inspired him to set up the company and produce medicines in a much more controlled environment with a seal of quality that patients could trust.”
Also speaking at the eyeforpharma conference was Almirall’s CEO Eduardo Sanchiz, who noted that, while patient-centricity is often talked about in the industry, “we have difficulties putting it in place”.
“One of the reasons is that, for decades, it’s not what we have been doing,” he said. “In our past we have been a far more physician-oriented industry and very hierarchical in our communication; so as we went from the companies, to the healthcare providers, to the patients, we were focusing the messages around products and data. And we focused particularly in our work on regulatory approvals, so everything around efficacy and safety.
“From this focus on the needs of regulatory authorities – themselves looking to catch up with today’s patient-focused world – more recently pharma has been looking to work more closely with payers, which brought into the equation additional requirements for measures on patient outcomes, quality of life, cost effectiveness and so on.
“The challenge is to balance the focus that we have with the different stakeholders, which is not an easy thing to do, because there are a number of them and we have to balance them appropriately,” Sanchiz said. “The regulators, payers, healthcare providers, and of course the shareholders, are a very important piece of the equation and we have a fiduciary responsibility to them, we have to very much keep them in mind.”
Showing leadership
Those companies that have successfully applied themselves to these challenges – whether they have proved themselves equal so far to the journey, or whether they are a little less advanced down the road – can all claim a strong leadership position on these issues.
The top-down approach has certainly been in evidence at ViiV, the joint venture between GlaxoSmithKline, Pfizer and Shionogi, as its CEO Dominique Limet told the eyeforpharma audience. “With the creation of ViiV seven years ago we had an opportunity to really engage the whole company on that journey – what we wanted was to make our mark and simply help patients living with HIV and AIDS.”
In doing so he said the company has established a very strong patient-focused strategy and culture, something that’s certainly been evident with the firm’s ranking in PatientView reports. This year’s survey of European patient groups marked the second year that ViiV topped the rankings.
Speaking about his own company’s approach Sanchiz said: “Going in this direction there needs to be a very clear message from the top and there needs to be an example from the top of the company, otherwise it will not work – it will just become nice words.”
He added: “What I do know is that if we all pull more and more in this direction, we will all win. Furthermore, payers demand more and better health outcomes. We have to put more ‘skin in the game’. We have to be much more engaged with what our medicines do – this is already happening with hospital products, but more and more it will happen with all kinds of products, so that will push us to be much more connected to what patients need.
For Lilly’s Hotchkiss too, the imperative for a company’s leadership is to remind the wider organisation of its aims. “We are founded on helping patients, but sometimes as leaders we maybe don’t talk enough about our heritage and our sense of purpose,” he said, noting that it’s important to be able to articulate “ why we exist as companies. And if we, as leaders in the organisation, don’t talk about this then we miss a big opportunity, both with our own employees and externally, because we’ve got a great story to tell.”
The ultimate customer is the patient and everything we do should “ladder up” to serving that customer
How things are changing
As much as ‘patient-centricity’ can be claimed to be wildly overused at times, there is movement within the industry to embrace the spirit and meaning of the term, with real change happening on the ground.
“As an industry we’ve been very much a ‘push’ industry – telling [people] about our drugs and why they should use them,” noted Lilly’s Hotchkiss. Consequently companies have “probably been less about ‘pull’ and engaging patients and customers”. But he says the big change he sees within his own company is the drive “to work more collaboratively to improve outcomes for patients”.
One of the things that Lilly has put in place that seems to have benefited the organisation is the introduction of the ‘service value chain’. “It’s often called the ‘service profit chain’ [elsewhere] and it’s not a new concept,” Hotchkiss explained. “A lot of companies use it to guide their businesses, but it’s certainly something new within our company. The basic principle is that leadership creates an environment with the company that’s more focused towards the customer and that leads to employees being more engaged, and more engaged employees create positive customer experiences that then generate business results. There’s a very strong correlation across multiple industries that with engagement of employees and business outcomes, profitability follows.”
He says Lilly’s own data backs this up, demonstrating a “very strong correlation”. In using the service value chain approach Lilly has measures in place that enforce that behaviour, such as a ‘service climate survey’ of how its own leadership approach is operating and ‘voice of the customer’ surveys. “At the end of all of that we look at the business results – I would say 10-plus years ago we probably focused all about results and the inputs that drive that, but now we’re very much focused on what drives that customer loyalty towards our company and we measure our leaders on that and take actions to improve that.”
The company has also changed the way it measures its operations – including in sales, shifting towards ‘voice of the customer’ measures. Another important shift, Hotchkiss says, was to define who the customer is. “The ultimate customer is the patient and everything we do should ‘ladder up’ to serving that customer, and that’s an important message.”
Pharma isn’t of course the only healthcare player to have to evolve to meet patients’ needs. A GP by training, ViiV’s CEO Dominique Limet began practising medicine at the dawn of the internet and recalled how ‘painful’ it felt to have a very well-informed patient in front of him.
“With all their relevant questions they possibly knew more than I did at the time, because they were focused on their disease, and it was a pain,” Limet told the eyeforpharma conference. But he added: “The world has changed, and information, knowledge, communities, networks, blogs… they are now everywhere. I think it’s part of the reasons why we need to embrace the patient voice much more than we did in the past.”
As new medical technologies like stem cells and personalised medicines continue to mature, “we are at the state when we need to really make sure that the patients are more included and engaged with our mindset”, Limet said. “We need to embrace the patient voice much more than we have in the past. We’re at the stage where patients must be more included.”