Precision medicine-personalized treatment for patients based on their genetic or molecular characteristics-is growing steadily in the medical world.The doctors saw success Use precision medicine to treat serious diseases For example, depression, colon cancer and leukemia, after testing these treatments in clinical trials.
But precision medicine is still far from being universally understood by patients.One 2020 survey It shows that two-thirds of Americans have never heard of precision medicine, and only 11% have discussed precision medicine with their doctors.
If precision treatment often works, why do people who meet the conditions rarely accept it? One of the reasons is that clinical trials of precision treatment are often difficult to recruit enough participants. It is also difficult for primary care physicians to quickly and easily access the genetic data of patients and the list of trials their patients are eligible to participate in.
Decentralized clinical trials can help solve these two challenges. Technically supported trials allow researchers to search for eligible patients within a larger geographic area.Then investigators can Use technology to share genetic data And safety information about precision treatment.
Decentralized clinical trials bring precision treatment to more patients
As i was discussing My article on rare disease trialsFor trials that require participants with specific genetic characteristics, recruitment is a challenge. 80% of clinical trials Recruitment is not completed on time, and precision medicine trials usually have a smaller patient pool than other trials.
Decentralized clinical trials address this challenge in two ways. First, they allow researchers to reach patients across the country and even around the world. Sponsors based in Houston can use technology to establish connections with research locations in Seattle, Boston, or small towns in Georgia. They can then recruit patients from all these locations.
If patients live far away from big cities, they can still use technology or visit local clinics or pharmacies to participate in the trial.
Second, doctors and research sites can use decentralized testing techniques, such as patient recruitment software, to find trials that may be eligible to participate. With the patient’s permission, this technology can match patients with tests suitable for their genetic or molecular characteristics.
But for patient recruitment software to work, the healthcare industry needs to make genetic testing widely available and affordable.
Genetic testing must become commonplace
Although 79% of patients Say they are willing to share their genetic information with the NIH database, but many patients who should undergo genetic testing do not.
For example, the National Comprehensive Cancer Network guidelines recommend genetic screening for breast and ovarian cancer for people whose family history puts them at risk.But according to one Study in 2020 references MedCity News Article by Dr. Joel Diamond, Only 50% of patients who are eligible for genetic screening due to their family history actually received these screenings.
Dr. Diamond also pointed out that some insurance companies Covers only single gene testing, Not a genetic panel test. However, patients who carry a gene that puts them at risk of cancer may increase their risk of other inherited cancers.
In order to increase the genetic screening rate and make precision medicine widely available, patient rights organizations, doctors, laboratories, and insurance companies must Work together to encourage genetic testing And make it affordable.
Precision medicine trials must be accessible
89% of people with disabilities Expressed willingness to participate in precision medicine trials. But 97% also said they had at least one barrier to participating in a clinical trial, and 76% said they had three or more barriers to participating.
Some reasons why people do not participate in the trial include:
- Unable to use healthcare facilities
- Difficult or expensive transportation to medical institutions
- Communicating with healthcare professionals is challenging
- It is difficult to find or access information about medical research
- Gene mapping can be used to discriminate against people with disabilities or chronic diseases
Decentralized clinical trials cannot solve all these problems, but they can help solve some of them. They can allow patients to submit genetic information at home or from nearby clinics without having to spend hours traveling to academic medical centers.
Technology can also provide information about trials in an accessible way. Patients can read information at their own pace on a tablet or computer, and use large fonts or screen readers when needed. Patients can also search the user-friendly database to find trials they may be eligible to participate in.
One problem that technology cannot solve is that some people are reluctant to share their genetic data because they worry that the data will be used against them. They worry that insurance companies will charge them higher fees because they are at risk of a certain disease, or they may not want to have children.
This is why it is important for investigators, primary care physicians, insurance companies, and lawmakers to establish ethical standards around genetic data. With strong regulations to protect patients, genetic data will be used for pioneering medical care, not discrimination.
Doctors need easy access to data from precision medicine trials
Precision medicine clinical trials can only help patients if the doctor understands the latest treatment methods.Since primary care doctors treat so many patients a day, they must be able to Watch in one place Used for patient genetic information and information about ongoing trials.
But the complete story of the patient’s genetics, family history, and risk of certain diseases is often Distributed in multiple electronic health records (Electronic Medical Record). This means that doctors may not realize that patients need genetic screening or are eligible for specific precision medicine tests.
Most importantly, genetic screening and Other test results It is not always included in the EHR. Software systems need to be integrated with each other so that doctors can access genetic data, family history, and test results in one program. Doctors can use all this information to find the best treatment for each patient.
How to make the integration of precision medical data a reality
In order to ensure that doctors can access patient health information, we need to ensure that all systems containing patient health information-including electronic medical records from different health systems-can be integrated.
Doctors and clinical researchers should search for systems with open APIs. Open-API software can be integrated with any other software with open API.
The health system also needs to share genetic data outside of its buildings for research purposes. Genetic data can only be shared with the patient’s permission. However, a database showing how certain genes affect health and which treatments are effective for people carrying these genes could make precision medical treatments more accessible.
Unleash the full potential of precision medicine clinical trials
Precision medicine clinical trials can help doctors find treatments that suit the needs of patients and improve the lives of patients with rare diseases, cancers and chronic diseases.
But in order for precision medicine to reach its full potential, clinical trials using precision treatments need to recruit enough patients with the correct genetic characteristics. This means using technology to reach patients who have historically been excluded from trials.
If clinical trials and the larger medical industry embrace these trends, integrated software, accessible genetic data, and advances in precision medicine can change the lives of millions of patients.
Photo: Wach, Getty Images
