How we involved people living with psoriasis in clinical trial planning
We asked patients for their feedback on an upcoming clinical trial in Australia. Here’s what they said.
Oct 22, 2015
People living with plaque psoriasis attended a patient advisory committee meeting and reviewed plans for an upcoming clinical trial in Australia.
They provided several recommendations, including tracking the amount of time people spend treating their skin each week, which can be significant.
The work of the Australian Novartis team further demonstrates our commitment to innovating for patients.
We recently invited a group of people living with plaque psoriasis to attend a patient advisory committee meeting and review plans for an upcoming clinical trial in Australia. We wanted to give them the opportunity to weigh in on the design of the study and the measurement of clinical outcomes.
Novartis Australia Chief Scientific Officer Nicol Kurstjens says this approach was born from the Novartis Patient Declaration, which emphasizes that respect for the patient’s perspective is fundamental to improving the debilitating impact of illness.
“Australian patients are providing firsthand input into their needs and wants from a treatment,” says Kurstjens. “Patient input makes sense as we are focusing our research on outcomes that matter most to those living with the disease.”
In addition to expressing enthusiasm for the study’s goals, the group provided some specific recommendations.
Ask quality of life questions
“Our goal is to provide a forum for the people most affected by psoriasis to provide input on the design of the study and the measurement of the clinical outcomes,” says Kurstjens.
“Along with the general enthusiasm for the study goals, the patients highlighted that they want the study to focus on how this medicine will improve their life, and [they] were also able to provide a number of specific recommendations that will be incorporated into the final protocol.”
The group suggested the study track the amount of time people spend treating their skin each week, which can be significant. With this data, doctors could potentially estimate the number of hours a patient may save by using a medication.
What’s in a (study) name?
The group also provided feedback on the proposed acronym for the trial, which we’ve accordingly changed. We were advised to temper the pharma-speak and develop a positive and future-looking study name that participants could easily understand.
By engaging patients in trial design, we can measure not only the scientific endpoints, but also how a protocol impacts the day-to-day activities that matter most to those living with a disease.
Involving people who are living with and impacted by disease and illness in clinical trial design is not a new concept to us here at Novartis. The work of the Australian Novartis team is just another example of our commitment to innovating for patients, as outlined in our “Declaration for Patients.”