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Janssen Open Their Doors to Patients
How the concept of ‘Open House’ is helping pharma get closer to patients.
For an industry that has historically focused on solving problems through scientific research and technological advances, shifting the focus from the disease to the patient can be challenging. James Fitzpatrick, Government Affairs, and Patient Advocacy Lead at The Janssen Pharmaceutical Companies of Johnson & Johnson, is due to present a case study at eyeforpharma’s Patient Summit Europe in October. He and Barbara Donalson, Patient Advocacy & Engagement Manager, will discuss the ‘Open House’ approach that their company has adopted and has run for the past 18-months – a practical approach towards making patient engagement a reality.
How did the Open House concept evolve?
The Open House concept was born towards the end of 2014 when Janssen was approached by a large patient group in the oncology space. The group asked if the company would be interested in supporting them in work that they felt would contribute towards improving patient outcomes.
As discussions progressed, it became clear that a new model of interaction might be appropriate. Those at Janssen felt that a true partnership needed to consist of more than supporting patient groups and charities by donating money. They wanted to contribute in a non-financial way by making their resources and expertise available. The patient group liked the idea of partnering with Janssen, but felt they didn’t entirely know what the company did, and thus how a partnership could work.
Fitzpatrick understood the knowledge gap immediately, as he had previously worked for a patient group in the auto-immune therapy area. From first-hand experience, he knew there would be varied understanding from any patient group about what pharma could leverage by way of support. It became clear that the company needed to “give a short, sharp, snappy flavor of what we do” to provide a better understanding of how a partnership could be of benefit.
How does the Open House concept work?
Fitzpatrick describes the actual process as “a little like speed-dating. A colleague comes in for half an hour and engages with the patient group. After this, the next person or team comes in.” TheOpen House is usually a full day event where various colleagues from different functions and with diverse expertise to present to the patient group and engage them in discussions and answer questions.
The result of the first and subsequent Open House sessions is that members of patient groups gain an understanding of the different roles various people have within pharma, and the behaviors required in certain specialty divisions. The concept is modified with each Open House that’s held. To date, there have been between 8 and 10 of these programs, and they continue to evolve. Sometimes the sessions are one-on-one with a specific patient group, but other times a number of groups from the same therapy area are invited at the same time. “This has been useful as the groups can interact with each other during the breaks,” says Fitzpatrick.
This is a first step in helping patient groups to understand the company; that way they can better engage us to become more patient-centered.
Thus far, only patient groups have been involved in Open House days. These have included a range of professional as well as patient-led groups, including some of the big charities. Some patients have attended, but these have been people with connections to a patient group. According to Fitzpatrick, “The Open House sessions haven’t yet been made available to individual patients, but we know the patient groups are well placed to share what they’ve learned.” Fitzpatrick is also aware that these groups don’t represent all patients but feels this is a positive step in the right direction in terms of making patient-centricity a reality.
At the heart of the Open House concept is increased patient-centricity
The whole premise of the Open House is “very much about being transparent, and is really born of my own experience,” shares Fitzpatrick. He understands that members of the public have some ambiguity about what pharma does, so is committed to working closely with patients, doctors, caregivers, and families to ensure that “they have a better understanding of us as a company and what we can do to ensure better patient outcomes.” In this respect, Fitzpatrick stresses that this is only one small part of a much larger effort that is being made. For Janssen, “This is a first step in helping patient groups to understand the company; that way they can better engage us to become more patient-centered,” he says.
Once we’ve established the concept, tailored it, and sharpened it up based on feedback, the intention is to run these not just by therapy area, but more broadly, and to have a truly Open House.
Although it is difficult to put a bottom line value to this program, Fitzpatrick is quick to mention that it’s not entirely altruistic. He’s witnessed patient groups challenging his colleagues in a way that’s been enlightening and has enabled discussions to take place that will help the company get closer to patients. He admits, “Partly by design and partly by luck, we’ve had some really interesting sessions, and we definitely get something from these as well.”
Evaluating the Open House concept
Measurement is an important aspect of Open House days and after each session, a participant survey is administered and a net promoter score obtained. The questions aren’t long or onerous but ask specifically about how attentive to the patients’ needs the participants thought the presenters from different teams were, as well any advice they’d like to give.
One thing that especially pleases Fitzpatrick occurred recently when he was at a large gathering of pharma stakeholders who meet quarterly. When the topic of increased patient engagement was raised, someone in the audience had attended one of the Open House days; he explained the concept to the audience and said it would be a good strategy for pharma to adopt. Fitzpatrick was delighted to have someone advocate for the Open House concept, completely unprompted. “It was clear that we’d made an impact,” he says.
The future for Open House days
“Our intention is to run Open House days next year with the patient groups we’ve historically had connections with,” shares Fitzpatrick. “However, once we’ve established the concept, tailored it, and sharpened it up based on feedback, the intention is to run these not just by therapy area, but more broadly, and to have a truly Open House.” The whole process is still being developed, but the intention is now to roll it out across the whole of the UK to further enhance relationships between patient groups and the industry.
When he presents this case study at the upcoming Patient Summit, Fitzpatrick is hoping that the sessions will be interactive and that people will see that being open and transparent can have great advantages. He is aware that this is not a perfect program, but he wants to share the success experienced so far. Prior to the Open House concept, Janssen had one or two projects with patient groups, but now they have more requests for exciting partnerships than they can support. “We’ve really gained tangible insights and this is what I’d like to share at the conference,” Fitzpatrick declares.
James Fitzpatrick, Government Affairs & Patient Advocacy Lead and Barbara Donalson, Patient Advocacy and Engagement Manager at Janssen will present on the Open House concept at the Patient Summit Europe, London, 17-18th October.
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