Actelion becomes latest recruit to join PatientsLikeMe
pharmafile | August 6, 2014 | News story | Medical Communications, Research and Development, Sales and Marketing | Actelion, PatientsLikeMe, digital
PatientsLikeMe and Actelion have come together in order to help create a new patient-reported outcomes tool for the rare form of blood cancer called MF-CTCL.
The collaboration will use PatientsLikeMe’s open research exchange (ORE), an online hub for developing and sharing new health measures that reflect patients’ real world experiences living with and managing disease.
Actelion is the first pharmaceutical company to use ORE to create a measure for a rare condition and, once completed, the company says it will share the data with other researchers.
The firm, which focusses on specialist conditions, markets a topical gel for MF-CTCL called Valchor (mechlorethamine). Actelion will hope to garner patient experience and real-world data from its collaboration with PatientsLikeMe to help better market and understand the needs of patients using its drug.
Actelion’s senior director Mitchell Nagao says he believes this open approach to research will enhance the existing evidence about MF-CTCL.
“As changes in technology, culture, and treatment affect how patients live with disease, we want measurement to evolve accordingly,” he explains.
“Our work with PatientsLikeMe will help ensure we’re applying the best principles for patient-centred research and giving tools back to the community so they can evolve them even more.”
PatientsLikeMe vice president of innovation, Paul Wicks, says the project further reinforces that ORE is a ‘proven platform’ for developing new patient-based measures.
He explains: “We created ORE to help patients and researchers work together to transform care and discovery that truly serve the patient. Now we’re past the initial pilot stage, and it’s exciting to see members of industry engaging with patients to develop more tools that really measure what matters to patients.”
Actelion will work with PatientsLikeMe to engage people who have MF-CTCL for support and research and to develop and test the tool.
PatientsLikeMe says that it welcomes anyone with MF-CTCL who is interested in contributing to join in at www.patientslikeme.com.
Growing pharma interest
But whilst testing out a new hub, this is certainly not the first deal between the group and a pharma firm, and its business strategy now relies on such deals.
The group already has ties with MSD on psoriasis, as well as Novartis and UCB. The Swiss company uses PatientsLikeMe as an online forum for post-transplant patients, whilst UCB uses it for bettering outcomes for people with epilepsy.
Both firms develop drugs for the disease and conditions they are discussing on PatientsLikeMe, which is becoming both a new marketing tool for pharma, and a unique way of harnessing real-world data.
Roche also signed up to a five-year agreement with PatientsLikeMe in April to allow the firm access to patients’ real-world experience with disease and treatment.
This type of website interface can develop into a goldmine for pharma firms, as it affords them an in-depth look into the patient population of a treatment, something it cannot easily attain anywhere else.
Ben Adams
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