By Ed Miseta, Chief Editor, Clinical Leader
Patient recruitment has always been challenge for companies conducting clinical trials. Knowing how to properly engage with advocacy groups can determine whether they will treat you as a trusted partner or a necessary evil.
‘’Fibrocell’’ is one of such company involved in the rare diseases space. Fibrocell is a gene therapy company focused on skin diseases caused by genetic disorders that impact children. They are currently working on a blistering genetic disorders called Recessive Dystrophic Epidermolysis Bullosa and treatment for localized scleroderma, a disease that effects the surface of the skin with lesions. They hope to connect with advocacy groups because they need patients for their trails. ‘’John Maslowski’’ from Fibrocell gives some tips to engage with advocacy groups:
1. Focus on Building Trust
If you work for a big Pharma Company, most advocacy groups are aware of your company and the products you are working on. For small biotech company, you may not be on their radar. So you need to feel comfortable reaching out to the groups and pursuing a relationship with them. These relationships work best when you can build a level of trust right up front. Advocacy groups do not always trust the Pharma Companies which approach them. When someone approaches them from the pharmaceutical industry, it is normal for them to think you might be trying to profit from their patients. The advocacy groups is in the best position to understand the challenges and needs of patients that can make for a constructive learning experience for the Pharma Company. Patients have a greater concerns over the pain or itching that might occur as a result of the wound. If that is what is really impacts their life, it should also impact your product profile.
2. Understand Each Other’s Focus
Different advocacy groups can each have a different focus, even if they operate in the same therapeutic space. Regardless of the type of advocacy group, it is important to understand each group’s focus. The worst thing you can do is making a presentation without dully understanding the mission of the group. Differences may also require you to speak them, differently. It is important for them to understand answer. Such as are you looking for gaining patient insights or conditions ore recruit patients? After understanding about their focus, you know how to help them. 3. A Different Patient Recruitment Process By expanding your trials, you will need access to more patients. Advocacy groups can help out. That type of outreach effort can be more effective than providing leaflets in a physician office. These groups will generally make use of social media, and they also conduct a lot of outreach to patients, especially via email. A Pharma Company is trying to provide information on treatment options and share updates about clinical trials.
4. Get The Right People Involved
When a large Pharma Company decides to connect with a patient advocacy group, it might send a slew of patient centricity officers to the initial meeting. Many will even have personnel who are dedicated to building relationships with these groups. The scenario is a bit different in the rare disease space. You can work with these groups directly to develop your relationship. Also if someone at any of these groups knows they have direct access to the company, it gives them confidence that the company is dedicated to support the group as well as patients’ needs.
5. Do Not Choose Favorites
If there are different advocacy groups to work with, do not show favoritism to any. Maybe you want to engage with 2 groups at the same time and both are in business to help same patients and there is a competition between them. You should show that you are supporting both groups, equally. These groups are aware of other’s activities completely and if you do not be equal they will understand. So you should not show your favor.