The Problem: Genetic professionals are hard-pressed for time

In all of Akshat Khanna’s conversations with genetic counselors and geneticists one common theme emerged, “Genetic professionals spend more than twice as much time on administrative and data-entry-related activities when compared to actual patient interactions,” he says. “They are always overworked and they could always do with more capacity to see more patients.”

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“With the Pre-Visit Patient Questionnaire we are able to save 50% of time per patient appointment, and that is a big number. That means that clinicians have more time to devote to high-quality patient care and the freedom to develop a healthy work-life-balance, relieving burnout."

As PhenoTips’ Senior Product Manager, Akshat discovered that in the patient care lifecycle, during and before the patient visit, a large portion of time is spent on manual tasks. First, the manual creation of a patient record and the entering of patient information into that record. Then, a family record is created in which information on each individual family member must be entered, also manually. Finally, in oncological genetics, cancer risk scores are calculated by manually re-entering relevant information from the family record into the cancer risk tool. All of which results in the loss of precious clinic time and introduces an additional burden on genetic professionals.

As Akshat points out, this results in loss not only of clinic time, but the quality of the first patient visit. “In many cases, where this information is not captured pre-visit, a big part of the time during that appointment is spent capturing basic information about the patient as well as the patient's family and their medical history. While this process is extremely valuable in establishing a relationship with the patient, it is often rushed due to time constraints. Rushed clinicians are not afforded the capacity to engage deeply with their patients, and therefore the patient experience suffers as a result.”

The PhenoTips team began to consider: what if all this manual work were automated? What if, with a click of a button, patients were empowered to capture their own family and personal health history at their own pace, from the comfort of their own home? What if clinicians could focus on their patient instead of their patient’s paperwork?

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“During an in-clinic appointment it's very hard for a patient on the spot to come up with this information, especially when you ask them questions around the medical history of family members.”

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The Solution: Digital patient questionnaires that auto-draw pedigrees

“Once we understood the challenges clinicians face, the idea was: how can we create something that is simple and not too complicated for both the administrative staff in the hospital to use, as well as for the patient to fill out.” Says Akshat. “So on the surface the Pre-Visit Patient Questionnaire is very simple; it's just a webform that is sent to a patient.”

The PhenoTips team was not interested in reinventing the wheel, just digitizing it. Patients are familiar with entering information into a form, so the Pre-Visit Patient Questionnaire (PPQ) was designed as a simple, digital version of a personal- and family-health-history capturing form.

Once a referral comes into the genetics department, a member of the admin staff with access to PhenoTips generates an intake form link for a patient —an intuitive process that takes a minute or less— and sends it to the patient, either stand-alone via email or, if available, via their EHR’s patient-facing portal, such as Epic’s MyChart or Cerner’s MyHealth. The patient can then fill in their demographic personal information, medical history, and family information, and click “submit” once the information is complete, which automatically generates a patient record, family record, and family pedigree in the clinic’s PhenoTips instance.

“The patient always has the ability to fill a part of the form, save it, and come back to it later if they want. They don’t need to sit and fill out the entire form in one go.” Akshat notes.

Patients have the freedom to save their webform, reach out to their family members to ask about their medical history, and update their form at their own pace, but once a patient clicks “submit” that information has been used to automatically draw a pedigree in the clinic’s PhenoTips system and cannot be edited by the patient.

Akshat notes that in addition to the automatically drawn pedigree, the automatically generated patient and family record will contain, “demographic information, family information meaning first-degree, second-degree, third-degree relatives, medical history of the patient, as well as relevant information about family members, and any additional free-text information that might be relevant to a clinician.”

The workflow of genetics clinics can vary greatly, so in addition to optional integration with patient-facing portals like Epic’s MyChart or Cerner’s MyHealth, the PPQ can also integrate with any clinic’s EHR or work in a stand-alone fashion.

“We also considered security, protection of data privacy, and protection of patient information.” Akshat adds that, in contrast to paper forms which introduce an element of risk when complying with patient data privacy laws, “We are hosting the PFQ on our secure cloud and the secure cloud is HIPAA, HITRUST, GDPR, SOC2 compliant, and this ensures that patient data and privacy is always protected. We also have the ability to have two-factor authentication enabled that further ensures that patient information is entered and accessed only by the intended individual.”

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"The PPQ can even improve the patient experience by bridging language barriers. This is due to its multi-language capabilities."

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The Result: Transforming care by putting patients before paperwork

“With the Pre-Visit Patient Questionnaire we are able to save 50% of time per patient appointment, and that is a big number. That means that clinicians have more time to devote to high-quality patient care and the freedom to develop a healthy work-life-balance, relieving burnout."

This massive amount of clinic time is reclaimed because, “there are three pieces of manual work which get automated if the patient just fills out this one form and clicks on submit: the entering of information into the patient record, the entering of family information, the creation of a pedigree, as well as inputting parameters into the risk score, if required. All of this is automated and this is what saves a vast amount of time for clinicians during an in-clinic appointment.”

While this improved efficiency means relieving the strain on overworked genetic counselors and geneticists, “it also improves the patient experience considerably, especially the interaction between a patient and a clinician.” Akshat adds, pointing to the time gained in the clinic, “When that patient actually comes to the clinic there is more time spent engaging with that patient, understanding their condition, and explaining the next steps to them, instead of spending time capturing all of this data and information.”

In the traditional patient intake workflow, regardless of whether intake is via an EHR’s patient-facing portal or via paper referrals, genetics-related patient and family information is rarely captured before the first appointment. This means that the patient is often put on the spot during their first appointment to provide their personal and familial medical history information.

“During an in-clinic appointment it's very hard for a patient on the spot to come up with this information, especially when you ask them questions around the medical history of family members.” Says Akshat, “When the Pre-visit Patient Questionnaire is sent to the patient beforehand, they have time to collect this information, maybe reach out to the relevant family members, and sometimes even review their own medical records. It’s not like everyone remembers every minute detail of their medical history off the top of their heads. Having time to process and collect that information before an in-clinic visit is very helpful, and that helps with the completeness and accuracy of the information that the clinician captures.”

This means that with the PPQ “instead of genetic counselors, nurses, or admin staff having to chase patients for this information and follow up even after that appointment because it’s incomplete, they have this information beforehand.”

The PPQ can even improve the patient experience by bridging language barriers. This is due to its multi-language capabilities, in the short-term supporting both English and French languages, and in the long-term the team plans to increase the breadth and scope of support provided for additional languages. In the meantime, “since this is a web form which a patient would be opening in a browser, this gives them the ability to use any inbuilt translator that the browser might contain, like Google Translate or Bing Translate, which could then translate that form for them to any language.”