Patient centered care has become the focal point of healthcare, especially in recent times. There have been a series of medical advancements exploring treatment options and care, providing patients the option of choosing the best course of action for them.
The application of patient registries are also becoming more patient focused. Due to these changes, patients battling chronic conditions and rare diseases have also witnessed an increased lifespan and better life, which is the ultimate goal of any healthcare facility.
The Role of the ‘Patient’ in Patient Registries
Patients have now advanced from being a passive recipient of healthcare to an active participant in clinical decision making. Since the primary goal of a patient registry is to improve patient outcomes, the experience of the person in question, i.e. the patient, is extremely important.
But is that always the case?
In recent years, patient registries have made significant contributions in providing real world evidence to decipher the best treatment, the best drug and the possible causes and risk factors of a disease affecting a certain segment. When compared with other methods, patient registries have immense scope in delivering data that can proactively be used to improve patient healthcare and for patient centered outcomes research (PCOR).
Steps to Increase Focus on the ‘Patient’ in Patient Registries
While once patient registries were focused on participation from driven by the academic medical center, this is now changing in order to improve and increase focus on patients. Here are a few ways in which this is possible.
- A hybrid approach is being used to enroll a larger number of people, which makes the registry more reliable. This focus on the number of relevant people employed makes a huge difference in the data collection process. In order to engage patients, there needs to be a greater understanding of patients’ motivations and driving factors.
- Experts should try to invest some time in understanding the experience of a patient all through the patient registry process. This will be done best by personally reaching out to patients to understand their emotions, concerns and fears for more active and involved participation.
- Another way to maximize patient outcomes in clinical registries is to provide participants valuable, visual data which tells them a lot about their contribution. When people see it makes a difference, they would be more convinced to participate. Some simple ways to do this by asking patients the type and amount of data they want. There should be attempts to understand how patients want to receive information. Before development of reports, patient reactions and experiences should be recorded to make the whole experience more patients focused.
Patient Registry Software Solution
The key to any successful patient registry is the patient registry software solution used. Clinical Pursuit has become a popular option for advanced patient registries that allow you the flexibility to make data collection and the whole experience more centered towards patients.