The journey of a patient with cancer is complex, intricate, and sometimes confusing. This is especially true as cancer is considered to be a life-altering condition, which impacts the physical, emotional, social, and economic reality for a patient and their family.

When it comes to diagnosis and treatment, electronic health records (EHRs) serve an important purpose in providing up-to-date information about patients and streamlining coordination between different hospitals and clinic departments, with the goal of improving diagnosis and care. However, while EHRs are a crucial part of value-based health care, they are intrinsically limited in that they only capture half of the patient picture: the physician’s perspective.

Patients with cancer, from early diagnosis through treatment and beyond, often have many medical experiences that don’t find their way into the EHR. These include a variety of symptoms, side effects, and lifestyle choices that can potentially affect their treatment in significant ways, including multivitamins, herbs, diets, cannabis, and exercise. Therefore, the question that arises is, how can health care organizations tap into the patient’s mindset and find the especially relevant information that is not necessarily recorded in the EHRs to improve care and outcomes even further?

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Sharing Personal Information

There is undeniable value in the information contained in EHRs, but, as mentioned above, what is often missing are the patient perspectives. This may include information that patients purposely choose not to share with their health care providers, or information that patients believe is insignificant to report. Additionally, while clinicians input all the key patient data into the medical record, they sometimes choose to omit what may be seen as small or inconsequential details.

Why are many patients not forthcoming when discussing complex and personal topics with their oncologists? The reasons to withhold information varies from person to person, but it is not uncommon to occasionally hold back due to discomfort and embarrassment. For example, controversial or highly personal topics such as cannabis or alcohol usage, sex life, and alternative therapies can be particularly difficult to discuss openly. In fact, many patients feel much more comfortable sharing and discussing this information anonymously with other patients who are in the same situation, rather than with their own health care team.

Furthermore, patients with cancer commonly visit different physicians to receive further information regarding a variety of procedures and treatment options, but do not always inform their primary caregiver about them. Not being completely attuned to what the patient is doing on their own might affect the whole process. Also, between the date of prescribing a treatment to its initiation, a lot can happen. Writing a prescription for the patient is one thing but it is difficult to know that they are actually filling it or if they are using it as prescribed.

Another area of cancer care where patients may withhold vital information is when they are offered to participate in clinical trials. To be eligible for a clinical trial, patients must meet certain criteria, and there is often a list of requirements that they might fulfil in order to keep the harmonization of the trial. In their understandable desire to find a new treatment that might help them during such a difficult time in their lives, some patients may be less than forthcoming about factors related to their eligibility for the trial.