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Turning the spotlight on patients

Involving patients earlier in the development of new treatments and drugs is becoming a more highlighted issue.

Recent survey findings and reports show that Swedish patients are more likely to experience problems due to inadequate coordination of their care than patients in many other countries , and that Swedish patients are among the least engaged by their physicians and least involved in their own healthcare decision-making. That is why, Anna Nilsson Vindefjärd, Secretary General at Research!Sweden, is one of many asking for more incentives to turn the spotlight on patients.

Progress in the US

In the end of 2012 Anna Nilsson Vindefjärd participated in a New York conference where patient organizations, healthcare institutions, companies and researchers met to discuss how citizens can benefit sooner from research results.
“In the United States a greater involvement of patients has started. Companies and regulatory authorities are getting more insight and are choosing to engage the patients more. The Food and Drug Administration, FDA, arranges meetings with patient organizations to discuss effect versus side effects, acknowledging that patients may be prepared to accept some side-effects if the treatment is effective enough. Previously the FDA would not have taken that into consideration in the same way and some treatments that patients wanted were not approved. Also, some business leaders have reported on an increased collaboration with patient organizations, which is not only important input in the development process but also motivates co-workers even more,” says Anna Nilsson Vindefjärd.

Collaborations with patient organizations

Stefano Marini, MD and President of EUCROF, the European CRO Federation, agrees with the importance of involving patients and patient organizations in clinical trials.
“One of the most delicate parts of CRO company activities is finding and identifying patients, and thereafter convincing them that it is in their interests to participate in a clinical trial. If we can see a greater collaboration with the patient organizations, this gives a clear advantage,” says Stefano Marini.

The Federation represents and supports the interests of CROs in Europe towards regulatory bodies, the pharmaceutical, biotech, medical device and other healthcare related industries within the field of clinical research, as well as the medical and affiliated research community. If the patient role seems to be in need of greater uplift in Sweden, this is also a question undergoing vast discussion throughout Europe.
“There is great interest in this matter. Several collaborations have been inaugurated to focus on this issue. The commitment is very high among European CROs, which have many volunteers working with this issue, writing scientific articles and conducting surveys. There are also several meetings and conferences being arranged to highlight the question of patient involvement,” explains Stefano Marini.

During 2013 EUCROF is organizing two conferences, one together with the European Medicines Agency, EMA, to discuss the role of patients. Besides governmental and industry initiatives, patient organizations are also making their voices heard to a greater extent and making sure they have an influence.
“Some patient organizations, for example those specialized in rare diseases, are even becoming the sponsors of clinical trials. Often these organizations consist of parents of children with these rare diseases who, for understandable reasons, want to hurry up in finding a treatment. What is becoming more apparent is that patients and patient organizations are not only standing by as witnesses any longer, but are taking the part of protagonists,” says Stefano Marini.

Anna Nilsson Vindefjärd concurs with the changing position of patients.
“They have taken a different role today. They are contributing input in several phases of the development process. The integration of patients is an important part in the process. It needs to be spelled out that research, healthcare and enterprises are all connected,” she concludes.