How pharmaceutical companies engage patients with PatientsLikeMe

By Daniel Ghinn

When we announced the Healthcare Engagement Strategy Award winners in January, we awarded PatientsLikeMe the ‘Changing Healthcare Award’ for having the engagement strategy we felt was most likely to change healthcare. Speaking with PatientsLikeMe co-founder Ben Heywood, it was clear that there was much more to come from the team behind what must be the world’s largest and fastest-growing set of specialist patient communities.

This month we’ve taken a look at new developments at PatientsLikeMe, including some exciting partnerships with pharmaceutical companies.

Novartis gets closer to patients

Earlier this month, PatientsLikeMe announced a new collaboration with Novartis to create a community for organ transplant recipients. It’s a brand new community and already includes over 600 patients.

Novartis CEO Joe Jimenez outlines why connecting with patients online is important for shaping the way Novartis works:

“We need to be closer to patients to understand their experience and their needs. An online experience allows patients to open up and share in a more personal and frank way.

“Our commitment to supporting this transplant community will shape the way we do our work, and ultimately help improve transplant patient outcomes now and in the future.”

This is the 12th disease community for PatientsLikeMe, and the second PatientsLikeMe community supported by Novartis who have already been actively involved in the multiple sclerosis (MS) community. In 2008, Novartis were amongst the first pharmaceutical companies to use social media for clinical trial recruitment when they engaged PatientsLikeMe’s MS community to boost registrations for a study.

UCB looks for adverse events amongst epilepsy patients

On the day we named the Healthcare Engagement Strategy Award winners, PatientsLikeMe announced a new epilepsy community in partnership with biopharmaceutical company UCB. In its first two months since then, the community has already grown to over 1,000 patients.

The partnership includes an interesting proactive patient safety initiative designed to capture adverse events associated with approved UCB epilepsy therapies, and report them to the FDA (Food and Drug Administration, the U.S. regulator).

Iris Loew-Friedrich, UCB’s Executive Vice-President, Chief Medical Officer says that the partnership with PatientsLikeMe will help UCB to understand patient needs:

“We believe this community will be a source of information that will allow us to better understand people living with epilepsy and may help us design clinical programs that incorporate real-world patient needs and experiences in a measurable way.”

Pharmaceutical companies: how to connect with patients

Pharmaceutical companies have many reasons to engage patients – for clinical trial recruitment; to learn about the needs of patients; to learn about use of their products; to educate patients about their treatment options – the list goes on.

Working in partnership with existing or emerging patient networks can be an excellent way to rapidly reach thousands of relevant patients online.

If you are looking to make the most of the Internet to engage patients, Creation Healthcare can help you to identify and develop suitable partner relationships, plan for their success, measure results and understand the strategic impact of the partnership.

Contact Creation if you would like a confidential discussion about your patient engagement needs.

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Meet the Author

Daniel Ghinn

Daniel has been at the helm throughout the company’s life since 1998. His rich expertise in working with pharmaceutical businesses has enabled CREATION to build business solutions that fit our clients’ needs.

Daniel is married to Jo, has three children, a cat, a dog, 28 fish, and 160,000 bees.