eyeforpharma Barcelona Awards 2016

Mar 15, 2016 - Mar 17, 2016, Barcelona

The search for the most valuable and innovative patient-centric initiatives

Building Bridges to Patients

Pharma should work with patient groups to develop solutions that best fit patients’ needs.



For Sanja Njegic, communicating with patients is not of purely academic interest: it is her day job. As Head of Patient Relations Europe at Novartis, she oversees a network of Patient Relations Managers in various European countries who help keep the company in touch with its most important users via patient associations.

“What’s important is to have a key point of contact,” Njegic explains. “We listen to our customers and they have told us they would prefer to know exactly who they should deal with. It’s much easier for them so we need to have this dedicated resource.” All the relevant staff are trained in patient advocacy and provide a vital bridge between Novartis and its patient populations, negotiating their way through local compliance rules and building long-term relationships with organizations.

Varied channels

The channels of interaction vary depending on the disease and patient population. Patient roundtables and advisory boards are two obvious ways of making connections. “You can’t beat good, old-fashioned face-to-face,” she laughs. Disease awareness campaigns in traditional media are also popular, as is contact via new channels such as social media.

Above all, it is important to be involving patients early in the process, Njegic insists. “At the heart of all partnerships is the common goal,” she begins. “We open lines of communication even if treatments aren’t yet available in a particular market. If they are still in the development stage, we want to find out what unmet needs there are and how we can best collaborate on projects. This is very important.”

Sense of co-creation

This sense of co-creation is key: for example, Novartis worked with the European Federation of Psoriasis Associations (EUROPSO) on pan-European clinical trials. “The idea was to gain insight on the most important endpoints,” she says. “We found that they had identified different things that we had not.” The company and EUROPSO developed patient-friendly materials together and also worked on ways to improve things for the future. “The important thing is that the patient perspective was considered every step of the way,” she points out.

Njegic is also proud of Novartis’ involvement in the European Multiple Sclerosis Platform (EMSP)’s Believe & Achieve project, which gets young, talented people with MS from across Europe into meaningful, paid employment with important businesses. “Many educated young people are excluded from employment due to the nature of their condition,” she says. Novartis was among the companies offering internships to people with MS, including Anna, a 25-year old who worked at Novartis Italy and talks about her experiences in a video. The Believe and Achieve project is a finalist in the Most Valuable Patient Initiative or Service at the Barcelona 2016 Awards.

Close collaboration

“We try to collaborate as closely as possible to ensure that we understand patient needs,” Njegic continues. “We approach them to discuss their goals, to get their insight and then we act upon that. We really do adapt and shape our activities based on patient feedback.”

Whether you approach them by phone or online, maintaining contact is equally important. “We believe in continuous relationship building: these are not one-off efforts on a project basis. We have to be listening to customers, understanding their needs.”

Last June, Novartis introduced its Patient Declaration, in which the company pledges a commitment to putting patients at the heart of its business. “To do our best for patients we do not accept the status quo,” the declaration runs. “We work to enable patient access worldwide so that patients and society can benefit as quickly as possible.”

Patient perspective

“We put patients first in everything we do,” Njegic confirms. “We give them the respect they deserve. There is value in involving patients in our initiatives and considering the patient perspective whatever we do.

This is very innovative but it all came out of listening to patients. They really find value in talking to each other and, through providing this platform, we heard a lot.

Listening before acting is the key, Novartis believes, as is the sharing of information. Last year, the company set up a series of roundtables with patient associations – for example, in heart disease or psoriasis - across Europe, giving them the forum to exchange views. “There were a lot of cross-cultural insights,” Njegic explains. “They shared best experience, enriching one another’s understanding.”

Common topics

This year, Novartis aims to expand on this by creating similar roundtable events across disease areas in Europe. “Many topics resonate,” she explains. “There are commonalities: for instance, HTA, trials, the psychological effects of chronic diseases. This is very innovative but it all came out of listening to patients. They really find value in talking to each other and, through providing this platform, we heard a lot.”

This will be a big part of the future for pharma, she believes, as companies themselves also gain from greater involvement in patient affairs. “It’s a win-win: there is a big value to all parties in learning from one another. Patient associations often don’t have the opportunity of sharing.”

Patient associations such as rare disease organization EURORDIS have also shown that the same cross-pollination of ideas can happen in reverse, organizing roundtables in Europe involving pharma firms themselves. “In the future, this will develop even more,” Njegic insists with the involvement of all involved stakeholders (patients, doctors, payers and pharma companies).


Sanja Njegic will be speaking at Barcelona 2016 on the topic "Standardize and Harmonize Your Patient Interactions to Strengthen Pharma-Patient Organization Relationships".

 



eyeforpharma Barcelona Awards 2016

Mar 15, 2016 - Mar 17, 2016, Barcelona

The search for the most valuable and innovative patient-centric initiatives