Representing the Patient with Social Media at ESMO 2017


Martha Orzechowski, Anna Rek & Lydia Makaroff

Ahead of the European Society of Medical Oncology (ESMO) 2017 Congress, Martha Orzechowski, Global Director, Oncology Patient Group Relations met with Lydia Makaroff, Director of European Cancer Patient Coalition (ECPC) and Anna Rek, the Community & Communications Manager at ECPC, to discuss their work as patient representatives at medical congresses and how they use social media on behalf of patients. The interview has been edited for length and clarity.

MARTHA ORZECHOWSKI: I am fascinated by how social media is used at conferences and, Lydia, you are active on Twitter both personally and you also contribute to the ECPC handle. What do you think ECPC gains from being on social media and specifically at congresses?

ANNA REK:  Social media provides the opportunity to create smaller communities within a big oncology network. It connects us with people who have similar interests and helps us build connections that can be initial investments in future relationships.

It also gives us visibility with key stakeholders such as policymakers and acts as another channel to convey the patient perspective related to current policy discussions. Our large following and successful online campaigns have helped us demonstrate our expertise in the field and make us attractive to potential partners. We distinguish our audiences on Facebook and Twitter and tailor the way we communicate with them but it took some learning to get there.

LYDIA MAKAROFF:  I’m the director of our organisation but I’m not a cancer patient myself. When I look through Twitter I hear stories of cancer patients from around the world. It reminds me of the daily challenges and successes that people experience, it’s very grounding. I can reach out on a one-to-one level and connect with members.

MARTHA ORZECHOWSKI:  You mentioned that one of the greatest things about Twitter is staying connected to the patients. How do patients benefit from following ECPC?

LYDIA MAKAROFF: Our goal is to support patients and our member organizations so as the European Cancer Patient Coalition, we encourage an international connectedness. It’s one of our main purposes because we’re an umbrella organization. So you’re not just a Polish cancer patient or a British cancer patient, you’re part of the European Cancer Patient Coalition. We bring all of them together to share stories, best practices and news. We try to be a source of inspiration.

ANNA REK:  And I would add it’s the relationship that gives us the inspiration and motivation to do it. Sometimes it’s just a light piece of news, but it’s important to maintain communication with patients so they know that they can always reach out to us.

MARTHA ORZECHOWSKI: And what kind of preparations have you made for ESMO 2017?

ANNA REK:  We already have a 6 page social media calendar! We decide ahead of time what we will publish with a plan for each day starting from the communication before the key call, the meeting, then as we go, of course, during the event itself.

LYDIA MAKAROFF:  We’ve already posted some tweets about ESMO, and we’ve had a lot of engagement with our personalized ones, including a photo of me and Anna at ESMO last year. People are saying, “We’ll definitely come and see you, we really want to talk to you.”

MARTHA ORZECHOWSKI:  That’s fascinating because it puts a face to your feed. People think, Okay, this is ECPC, but ultimately, we know that this is Lydia and Anna, this is what they look like, much more approachable, we’re going to go up to them and say, we saw you on the internet, now we’re here to talk to you.

ANNA REK:  Absolutely, it’s important to keep the balance between a professional face and to show a more personal side. We can post something like “We are just putting up our poster for the poster exhibition.  Tomorrow, we’re going to post our presentation, please come and see it as we will be there.”

MARTHA ORZECHOWSKI: Do you have any advice for PAGs or patients who are starting out on social and taking the first steps to expand their network?

LYDIA MAKAROFF: Focus on the quality of the content, so that what you’re sharing is authentic and useful. Create a good product and people will come. Don’t become obsessed with the number of followers you have or follow people randomly.

ANNA REK: Yes, and make sure to post regularly. If you don’t, people will unfollow you or hide you in their news feed. That’s why planning and strategy is important to keep the balance between posting often enough and maintaining good content.

LYDIA MAKAROFF: And one limitation is Twitter’s 140 character limit which changes what I tweet about. I have over 3,000 followers, so I try to balance showing my human side while being professional. I often worry that something could be taken out of context, which could be an issue.

MARTHA ORZECHOWSKI: Whenever I talk about social media internally, I always say there’s an art and a science to social media. How do you think pharmaceutical companies like AstraZeneca can help patients or patient organizations from a social media perspective?

ANNA REK: Pay attention to health-related news, what’s happening in the market, and new therapies. I know that it’s important to promote your hard work, but be a source of health expertise as well.

LYDIA MAKAROFF: AstraZeneca was one of the supporters of our May bladder cancer campaign and we’re very thankful. We got a lot of engagement through that campaign.

MARTHA ORZECHOWSKI: I’m interested in how patient advocacy groups approach congresses more generally, too. What are your overarching priorities at ESMO this year?

LYDIA MAKAROFF: One would be promoting our work, like the ESMO survivorship guidelines, nutrition survey, and value of innovation white paper, through posters and sharing sessions. The second priority is to learn. There are fantastic sessions about the latest and greatest efforts in patient advocacy and treatments. Third, ESMO is a good time to build relationships with industry partners, other patient advocates and health professionals to make sure we can be a player in the oncology community.

MARTHA ORZECHOWSKI: And finally, do you have any favorite people on social media that you always go to for information? 

LYDIA MAKAROFF: For factual information, I mostly follow the oncology journals, so the Elsevier and Nature journals. But I also follow other European organizations, such as ESMO and the European School of Oncology.

ANNA REK: Yes, I agree the European health organizations are the most trustworthy. The European Commission and MEPs are directly and deeply involved in certain subjects, so we can be sure that when they publish it’s accurate and can immediately share it. 

MARTHA ORZECHOWSKI:  Thank you both for your time. We look forward to following your social feed at ESMO 2017 and working with you to ensure we’re contributing to a vibrant online oncology community!


Veeva ID: Z4-6951
Date of next review: September 2018