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Thought leadership and innovation for the Pharmaceutical Industry

Close engagement with patients is so far a largely unrealised opportunity for pharma in Japan, where patient centricity as a concept is not as fully developed as it is in other parts of the world. 

 

“In order to really improve treatments and the focus of the overall industry, you need the engagement of healthcare professionals (HCPs), the authorities, the pharma companies and of the patients,” says Stefan Sakurai, President and Japan Representative Director at LEO Pharma. “We haven’t really got to the last one yet.”

 

Why is this? One reason is that healthcare routinely takes place in a hospital setting. In other countries it is far more often via GP practices, followed by self-managing care at home. 

 

Such hospital settings tend to be more prescriptive, whereas outpatient services require more patient engagement with their own care. 

 

“Outpatient care puts more of a burden on patients to understand about their own disease, how they can self-care and how to be more empowered,” says David Hernandez, Head of Clinical Operations Japan, Global Clinical Operations at Merck. 

 

The patient advocacy group gap

We have a great opportunity to support an increase in organised patient advocacy. “In Japan, right now, there are relatively few patient advocacy groups,” says Susie Barnes, Vice President and Country Medical Director of GlaxoSmithKline Japan. While it depends on both the therapy and geographic area, as a whole, she sees the landscape as sparse compared with other markets she has worked in, such as the UK and Canada.

 

“However, in the current environment, in particular, with the Covid 19 situation, we see that the patient need for support in different ways is increasing, whether patient advocacy or telemedicine consultations. As patient focused organisations, we have the opportunity to better understand how we can stimulate such activities within the Japanese healthcare environment.”

 

And where patient advocacy groups do exist, they are often not independent. “They are often co-led or strongly advised by a top key opinion leader (KOL) in the treatment area,” says Sakurai. “These HCPs can be an integrated part of the patient organisation, which makes it very difficult for the group to work as a challenging organisation to other HCPs or the pharma industry.”  

 

Taken in tandem, this leads to limited engagement between patients and advocacy groups, making access for pharma companies challenging. 

 

Close engagement is further hindered by strict regulation around collaboration with patient groups. Direct interaction with patients is restricted, says Sakurai, and interactions have to be in formal settings, with everything open and on record, stifling scope for such engagement to drive innovation in a competitive market. 

 

In certain respects the lack of engagement also stems from a lack of demand. Compared with other countries, there historically hasn’t been a demand for patient organisations in Japan, says Hernandez. “In the US there has been this whole patient empowerment movement and patients are eager to get involved in communities. That doesn’t really exist here and there hasn’t been a huge thirst for it.” 

 

He cites Merck’s recent pilot study of cancer patients. Asked whether they would seek access from patient advocacy groups or connect with other patients if given the opportunity, the results were mixed, with some happy to do so, but many others preferring to keep their health private and to educate themselves via their doctor or even a pharmaceutical website.  

 

Commitment and company buy-in

But change is happening and some pharma pioneers have begun laying the foundations for closer partnerships with patients. GSK, Merck and LEO Pharma, for example, all bring patients and head of patient organisations into their offices to share their experiences across a wide variety of disease areas. Their testimonials are a strong motivator for staff, says Sakurai – “you're really moved to make a difference.” 

 

Barnes agrees that there is no shortage of desire to engage from staff. “My colleagues are absolutely passionate about and dedicated to patient focus. There's a lot of strengths in Japan and the culture of understanding the patient, the patient need and the desire to change – it’s unfailingly there.” 

 

What’s often missing inside pharma organisations are the structures for employees to engage in a concerted manner, says Satoru Noguchi, Founder/Principal of GlobalMindset. “Each individual has a strong patient-centric mindset,” he says. “So from each individual, the potential is very high. What’s missing is the mechanism for gathering and using that individual strong will.”

 

The first steps towards patient engagement 

Noguchi created such a mechanism by convening a team which cut across all areas of the business from medical and R&D to sales, HR, finance and all other functions.  

 

“We made a project and value team which is not senior or junior, but a middle layer, cross-functional team,” he says. “I gave them the mandate – how could we improve patient-centric activities on a daily basis? Giving the mandate is easy, but it is more important to let people think. There were a lot of creative ideas.”

 

Supporting disease days is also becoming a mainstay of pharma interactions, with some pharma companies including LEO Pharma supporting patient organisations during October’s World Psoriasis Day in raising awareness of the condition. “For psoriasis, we’ve succeeded in increasing the patient engagement for the organisations, but I still think that we are far from where we are in Western countries,” says Sakurai.  

 

Expanding patient-centred possibilities

GSK Japan is building on the patient engagement roadmap laid out by the global team in recent years. Patient advisory boards, patient reported outcomes (PROs) and patient-centric product design are all being incorporated into its strategy. 

 

Additionally, GSK is now implementing a process that incorporates patient insights into the review of study protocols. “I’d also like to see more visibility of patient advocacy groups,” says Barnes, looking forward. “And my intention is to have specialist roles to champion patient needs.” 

 

She envisions these specialists driving patient engagement across the medicine lifecycle, building seamless working partnerships with patient advocacy groups and, crucially, providing insights back into the global organisation.   

 

“We've got a system which organises the insights we get from experts, and data scientists and analytics are able to pull out insights that can be useful for both the global and local organisations,” says Barnes. “The intention is to have that exact same process for patient insights.” 

 

Listening and facilitating

Education and facilitating an exchange of ideas are also important goals, says Sakurai. “A big part of our engagement with patients is not actually providing treatment, but providing a place where people feel that their voice is heard. Often HCPs won’t have the time or capacity to interact on a regular basis, so we’re developing more tools to do this.” 

 

“Patients tell us, ‘We have questions, but I don’t want to bother the doctor – he’s too busy,’” agrees Hernandez. “We want to make doctors aware that the feedback we get from patients is that they want more information. You don’t have enough time, so maybe we can support you in developing tools which you can direct to the patient.” 

 

Merck, in an initiative led by global R&D, is moving to make the language on its own website more patient-friendly, for patients who do seek out information there, as well as seeking to make available a smartphone-enabled patient web portal for patients participating in clinical trials. “After the realization of this initiative, they will be able to access information about the study, the medication and then if they want to, they may be able to access their data in the future,” says Hernandez.

 

This could include their bloodwork or EKG results,for example. “Patients were actually very excited about that possibility,” says Hernandez. “That’s not usually offered to them, and they were very interested in being able to access their data in real time.”

 

For Noguchi, the key to success is to take a cross-functional approach. “Then the whole pharmaceutical company is helping the patient – rather than just sales and medical or R&D,” he says. “You’re utilising the Japanese strength of teamwork, and that really encourages employees to go the extra mile.”