Perspectives on the Role of Patient Advocacy Groups in Patient Recruitment for Clinical Trials
Jul 16, 2010
by Liz Moench
The following was adapted from a ‘live’ interview between Taren Grom, Publisher of PharmaVoice and Liz Moench, President & CEO MediciGlobal.
PV: You have noted that patient recruitment companies and patient advocacy organizations have a natural alliance and a mutual benefit to bring clinical trials to patients. What are some best practices in making this connection a successful collaboration?
MG: In my experience, I’ve found that a key component to creating these successful patient advocacy collaborations is building a relationship based on an ‘equitable exchange’, whereby advocacy groups feel that what they are putting into the relationship is equal to what they are getting out of it. For example, on the one hand advocacy groups can provide us with the voice of the patient, which is essential to the recruitment planning process; in return advocacy groups emerge as new key opinion leaders (KOLs). With an important stake in the clinical trials process they represent a key constituency that industry must take note of. Patient advocacy groups that are involved in the recruitment planning process offer sponsors access to well defined patient-communications channels for sharing study details with other patient ‘members’. Information dissemination is another part of the equitable exchange that sponsors benefit from when patient communities are given a voice in the clinical trial process. Pharmaceutical and biotech communities can tap into existing patient communications channels in advance of the recruitment process. Open discourse and a receptive environment can go a long way to making the clinical trial experience rewarding and successful for everyone involved.
PV: You have also noted that industry needs to change the nature of patient recruitment to being supply driven (recruited and qualified in advance of need) rather than demand driven, (where patients are generally only sought in response to the needs of each trial, one after the other). What needs to happen to make this a paradigm shift in order to overcome this chronic issue?
MG: Given the rapid speed at which business moves these days, patient recruitment timelines continue to get shorter and deadlines become increasingly truncated in the rush towards the approval process. Of course, databases exist, but these can often be dated with stale information, and we know that patients’ medical conditions change, and depending on the nature of the condition the change can be rapid or slow over time. Pharma companies must be wise consumers of databases. Consider for example whether a company that claims to have a 65 million patient database that is 20 years old is actually providing an accurate picture of an up-to-date patient population. In contrast, many advocacy groups maintain dynamic databases that are not only up to date in terms of health conditions but have the added advantage of accessing willing, informed and motivated patients right at their fingertips. The Alzheimer’s Association of America just launched such a program this summer.
This interview was conducted during the 46th Annual Meeting of the Drug Information Association (DIA)

