Improving patient centricity by utilizing patient advocacy groups
Patient centricity is a common phrase appearing in the patient recruitment field. Its message is “putting patients first,” which invites more patient input into the clinical trial process, and is one way pharmaceutical companies are actively becoming more patient-centric. Patient engagement can be enhanced by the development of relationships with patient advocacy groups (PAGs).
PAGs are groups of people with common interests generally comprised of patients, patients’ loved ones, caregivers, patient advocates and medical professionals. Patient advocacy and patient support groups are found in most, if not all, therapeutic areas. The core goal and purpose of many of these groups is to support patients and their interests within the broad context of the healthcare system. PAGs are often recognized nationally and globally. PAG’s are widely recognized as trusted sources of information. Through PAGs, patients can keep abreast of new knowledge on their condition and treatment updates.
Getting the most of Patient Advocacy Group (PAG) outreach
- Search for PAG programs with an indication that matches your trial.
- Explore the PAG’s member offerings.
- Can you post information about the trial on the PAG’s website?
- Can you get your trial included in a newsletter or email blast?
- Can you add trial information to discussion threads on the PAG’s website?
- Reach out to the PAG, ideally to form a more concrete relationship.
PAG outreach is a great complement to an overall patient recruitment strategy. Engaging members of a well-executed PAG program is a tactic to assist in increasing awareness of a clinical research study. This can result in significantly higher level of study awareness and an increased number of patients seeking information about the study from the PAG, their physician or a local investigative site. A PAG may have multiple communication options available to potentially engage members. Examples vary greatly, but typically include patient newsletters, email communications to member databases, internet discussion forums, face-to-face or online meetings and even sponsored sports/social events.
If you are not currently engaging PAG’s as a part of patient recruitment planning, consider identifying those in the therapeutic area of interest. You can begin by simply using search engines to research and identify potential groups. Next, research service offerings available from each identified group that would allow you to connect with their constituents about clinical trials. High-touch tactics to explore include posting study information about your study on the PAG website; getting study information added to patient newsletters or emails and including study information on discussion threads or under “clinical research” notifications.
Once a PAG that suits your outreach needs has been identified, engage them the way you would a new vendor. Start the process early. It can take some time to get the appropriate paperwork in place. It is also a good idea to proactively seek key influencers and decision makers within the group, introduce the study team and seek buy-in from PAG about increasing study awareness.
Patients are more involved with their healthcare than ever before. Technology advances have made it easy for patients to share their voices through PAGs. PAG outreach can be a very powerful tactic to increase study awareness. Relationships with PAGs across all studies can further efforts to become more patient-centric.
Ashley Tointon has more than 18 years of patient recruitment and project management experience supporting clinical trials and the pharmaceutical industry. Currently she provides recruitment expertise, strategy and leadership as Principal Consultant of Accelerate Clinical Enrollment LLC. Email comments and suggestions to firstname.lastname@example.org
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