Every patient registry has several stakeholders. A patient registry stakeholder has an interest in the outcome of the registry. This is why it is important to understand the art of recruiting registry stakeholders. However, you first need to identify who the stakeholders are in your patient registry?
Patient Registry Stakeholders
In order to determine the registry stakeholders, you need to decide the goals and objectives of the patient registry. Every registry is different and could be targeted toward a different outcome. For example, a patient registry can help to understand the course of a disease, assess product safety, improve patient quality care, and aid in the development of a drug or medical equipment.
Some common patient registry stakeholders include:
- Research Organizations and NGOs
- Pharmaceutical companies
Recruiting Registry Stakeholders
After you have identified patient registry stakeholders, you need to work towards recruiting them. Without the relevant stakeholders, your registry will fail to receive the funding it needs.
A physician may choose to participate in a patient registry if they receive incentives like reimbursements and acknowledgment. If you want an accredited physician to associate with your registry and gain access to their list of patients, you need to understand how to recruit and retain them. Doctors typically value the relevance of the registry, i.e., the benefits it holds for patients. You will also need to prove the credibility of the registry leaders.
Patients are the most important stakeholders in any patient registry. Patients often value their physician’s approval, so you need to make sure you enroll the right doctor for the cause. Patient participation and recruitment can be challenging, so you need to take care of a few things. First of all, make sure they know their privacy will be protected at all costs. You also need to establish how this patient registry will benefit the patients and incentivize their participation with benefits for the healthcare industry.
ROs and NGOs
Research organizations and NGOs provide the funding that is needed for a patient registry. You can recruit these organizations by presenting a well-planned and thought-out patient registry plan. Make sure you also approach the ROs and NGOs that are already working and centered on the disease or condition that your patient registry is tackling. Make sure you also ensure and maintain patient participation to retain your stakeholders throughout the process.
Pharma and biotech companies are often interested in collaborating with patient registries as the data collected could aid their drug development process. However, to recruit the pharmaceutical company you need, make sure you establish the goals and reliability of the patient registry.
If you want to recruit and retain patient registry stakeholders, you need to have a solid base. The patient registry software solution you choose should be HIPAA-compliant and ensure patient data privacy. This software should also be flexible and allow for the addition of more data. This will help develop a well-rounded patient registry that will successfully attract and retain the patient registry stakeholders.