Lung cancer is one of the leading causes of cancer death in the world, and yet the disease has long been stigmatized. This leads to a sense of isolation for people struggling to deal with the upheaval of a lung cancer diagnosis even though there is a large patient population out there consisting of many who have been through it all before. AstraZeneca wanted to do something to help bring patients together and connect them with others who could inspire them to learn to live with lung cancer. This involved a creating a new program that the pharma company had never done before.
LVNG With (pronounced “Living With”) is both a patient-centric website (LVNG.com) and a series of live events across the country, comprising a day of inspiration and encouragement from people who are living with lung cancer. LVNG With was co-developed by AstraZeneca and three leading lung cancer advocacy organizations (Bonnie J. Addario Lung Cancer Foundation, Free to Breathe, and Lung Cancer Alliance).
John McCarthy, VP of Global Commercial Excellence at AstraZeneca, gave PM360 the inside track behind the program’s development, the challenges they had to overcome, advice for anyone looking to do something similar, and a preview of what’s next for the program.
PM360: This is the first time AstraZeneca has done this sort of initiative. Can you explain what inspired it and what led you to do something different?
John McCarthy: Sure, but first some context: My part in the organization is in digital strategy and innovation, so I have an innovation group in London that’s in partnership with DigitasLBi. We try and look at the big problems that are facing our patients or healthcare providers and create solutions that are going to make a real difference for them. When AstraZeneca’s research in cancer took a direction into lung cancer, we started looking at the lung cancer community—that was really the origin of this program.
While searching for deeper insights into people with lung cancer, we found they consistently pointed to this serendipitous moment in which they met another person with lung cancer who really inspired them to live with lung cancer instead of just waiting to die from it. That insight inspired us to find a way to activate a community of those living with lung cancer by providing emotional support and motivation for patients and their loved ones.
We did that in a multifaceted way. We created online assets that are available to anyone in the community. We also have an offline campaign—a quarterly newspaper that brings to life the stories of the people we’ve met. And we thought it was important to provide live events that can connect people and provide education and the emotional support for both the patient and their caregivers.
Obviously pharma is a very regulated industry and anything you do has to be approved. How closely did you work with the individual patients or advocacy groups you partnered with in actually crafting the content and the videos you put on the site, or were they given free rein to discuss what they wanted? And was this intentionally unbranded for regulatory reasons?
We were careful to make this not about treatments or products, so we asked for that to be left aside. The program itself includes about 100 people that we talked to—both patients and loved ones. The stories on the website are very much the ones that they told. We tried to stay true to the original insight around patients wanting something more. Their lives are changed forever, but that doesn’t mean they can’t have a rich, valued life as they go forward. So the patients’ stories on the website focus on what they are doing with their lives, what’s important to them.
Did you actually go out and speak with these 100 people?
We did, and what is kind of neat is that what you see on the site is a lot of the footage that was done as part of the research. Because frankly, the stories don’t change and those were the moments that they wanted to talk about—the ones that describe how they got through it or how they can inspire others to fight through it.
On the website, you also have sections like hobbies and leisure, finances, work, travel, fitness, nutrition—all with tips in those areas for people with lung cancer. Did you intend to include those areas before you started or did they come up organically through the conversations with patients?
It really came from grouping discussions that had happened. For example, a lot of people wanted to talk about travel and how do you find the right travel agency that knows how to deal with a lung cancer patient. So as the richness of the stories got deeper in certain areas, themes started to pop out. We just did a decent job of pulling the themes together to provide a resource of what patients living with the disease are saying is important.
Even though you talked to 100 patients, you currently only have 12 of the personal videos up on the site. Do you plan to include more videos from the research in the future?
There is an opportunity for us to continue to bring in new people that are living with the disease, but it might not necessarily be from that original 100. We just had about 100 people attend the three live programs over the last three weekends, so right there is another potential 100 stories.
It is also about finding the right stories to feature that stay true to the idea of providing support for those living with the disease. The current stories certainly have an enduring similarity, but each of them has their own pieces and twists that are important. For instance, Richard, who is prevalent on the site, has been living with lung cancer for more than 10 years. That’s amazing and it’s incredibly encouraging to patients who are anywhere from six weeks to three years on their journey to be able to see someone like Richard.
Speaking of the live events, can describe what you did for those in a little more detail?
The events are open to all patients and caregivers in the metro area. We hit San Diego, Dallas and Philadelphia, with this initial year program. Each meeting begins with a story from one of the lung cancer survivors. Then we bring together a panel that has a couple of lung cancer survivors along with a nurse navigator, a member or two from the advocacy community, and one of our folks to proctor the discussion. The idea is for all of those different perspectives to be instructional and motivational.
For example, the advocacy groups share some great programs and resources that they have for patients. We also explain the navigator program, which is a position that many institutions have that helps patients who were newly diagnosed begin their treatment journey and sort through the system. Participation from the attendees is encouraged as well, so it’s not a one-way communication. The room is small enough and intimate enough that it can be more of a discussion.
What has the attendance been like for these events?
In San Diego it was about 25 or 30. We had about 15 in Dallas and then about 50 in Philadelphia. I think Dallas was a bit of an outlier. However, I will say the Dallas people that came were incredibly engaged and all of the folks there were telling stories. The room was just full of stories and the smaller venue really lent itself to more interaction, which was a different kind of positive we didn’t expect.
Is this something you plan to continue to do next year?
Yes, but we don’t have a schedule yet. However, we’re very encouraged by what we’ve seen so far and plan to continue.
What lessons did you learn doing this program for the first time? Do you have any advice for people who want to do a similar program in which they’re working so closely with patients?
The right partnerships are important. The three groups that we’re working the most closely with—Bonnie J. Addario, Free to Breathe, and Lung Cancer Alliance—have been great in helping guide us and providing a little credibility, frankly, because we do get a few headscratchers about why a pharmaceutical company wants to do this. That also helped us create a venue that’s free of the commercial aspects and is focused on what’s best for the people.
You mentioned some patients questioned why you were doing this. Did you have any other challenges you had to overcome in order to get this program out there and successful?
Any time you’re taking on a new idea and you’re this close to patients, you have to really be hand-in-hand with your compliance and regulatory folks to make sure what you are doing is within the guidelines. We were very fortunate in our partnership with those parts of the AstraZeneca organization. The people there were focused on finding a solution that would work rather than just saying, “No. Out of the question.”
One of the main goals you mentioned for this program was to create this community and connection between patients. So was there ever a consideration to do this through social media and provide a platform where patients could connect online?
Actually, that is one of the next phases. We recently added a Facebook page and Instagram so patients can continue to use to share their stories.
That’s interesting. You don’t see a lot of pharma companies with Instagram pages. Do you have any plans for what you’re going to do with that?
Obviously we’ve had some success with Facebook with some of our products but Instagram will be a little new for us. So we’re still working through that.
Do you have any other future plans for the program?
No, for now we just want to continue to gather patient stories and bring them together. We’ve built this whole program on the interactions with the patients within this community, and it’s been real inspiring to feed the human spirit of the people that have been involved so far. It’s been a real privilege to be part of.