Today's Healthcare Needs Patient Entered Data

The changing role of patients. Although healthcare systems have been structured the same way over the past several decades, clinicians and patients are changing expectations of their roles in delivering and receiving high quality care. Patients want more information about the financial cost of treatments and medications. They want to compare prices and decide what and where to make their purchases. Patients are also more aware of quality and safety issues. A recent survey by the Institute for Healthcare Improvement (IHI) and the National Patient Safety Foundation (NPSF) found that 21 percent of Americans have experienced medical errors, with another 31 percent who report that people they know have had this experience.1 Care, whether in and outside hospitals, is getting more complex, and that complexity brings with it more risk.

Patient involvement in their own care. More care is happening outside hospital walls, making patients and their caregivers responsible for carrying out interventions that nurses and other healthcare professionals have done in the past. That means they need to understand what and why they are doing it, and also how to enter the feedback loop that addresses if the intervention is effective and if there are important symptoms that need to be addressed. As a patient’s care becomes more complex, more clinicians are involved, and patients and caregivers may need to communicate with more than one clinician at the same time. How can clinicians integrate all this information into the work they need to do?

Patient-Reported Outcomes (PROs). Patients are beginning to electronically report their symptoms, and the initial projects have proved promising. In the past, symptoms have been recorded by clinicians who ask patients questions during visits and then record the answers in their notes, but these records do not always reflect patients’ true feelings.2 Some organizations have designed systems that allow patients to electronically report symptoms when they occur. Unfortunately, most EHRs are not designed to accommodate this capability for several reasons:

  1. Patients need to be enabled to collect this data on their own smart devices with an appealing user interface, which are not available in today’s EHR systems. Additionally, providers do not feel they can add this functionality as it will require substantial investment in solutions that may not be easy for patients or clinicians to use.
  2. Although the value is demonstrated, payers have not started supporting its use by creating ways to pay for it. Today, the way most care is reimbursed is for in-person visits, with other means of patient communication not usually reimbursed.
  3. There are no good visualizations available for clinicians to review during visits, so clinicians are less likely to utilize this information to help manage their patients’ care. With short visit times, and little if any reimbursement for communication between visits, clinicians cannot easily bring this information into their treatment recommendations.
  4. To some extent, clinicians have questioned the validity of the data, but this concern has been shown to be unwarranted with experience and published evidence to the contrary.3

An area where much work has been done to hear the patient’s voice is in cancer care. The National Cancer Institute (NCI) developed and tested a way to enable patients to record their symptoms to supplement the data available for research and adverse event analyses. Patients were able to record symptoms via internet or telephone using scales for frequency, severity, interference, presence/absence and amount for various symptoms and conditions. The researchers found that patients’ reports improved the predictive capabilities of clinicians’ ratings. In addition, the patient reported data generally agreed with providers’ adverse event reports.4 Other conditions have had symptom monitoring apps (mobile or internet-based) developed for them that allow patients to print reports and bring to their clinical visits. Optimal solutions, however, would facilitate better integration into EHRs so clinicians can access timely information about progress toward goals and obtain more timely notification of deteriorating conditions.

Team care for complex patients. For now, it will take people and technology to develop high quality, convenient and low cost care. As care becomes more complex and less hospital-centric, more skills and more types of professionals will add value and work together to reach better outcomes.5 As team care becomes more common in the U.S., data needs and data management will also change so that current EHR systems will not be adequate to enable and measure optimal care. Patients and families will become more involved in administering care, monitoring tolerance and symptoms, communicating with various clinicians and evaluating the results. Good education by clinicians will be essential, and various ways to provide resources at home when patients have questions will be important to avoid adverse consequences. Technology, including telehealth for therapists, pharmacists and dietitians, and internet classes for pregnancy, diabetes and more will add convenience for patients and family caregivers so they don’t have to travel to get good information and help solve problems.

1New Survey Finds 21 Percent of Americans Report Personal Experience With Medical Errors. IHI/NPSF Press Release (September 28, 2017). Accessed at

2Miravitlles M, Ferrer J, Baro E, et al. Differences between physician and patients in the perception of symptoms and their severity in COPD. Respir Med 107:1977-85 (2013). Accessed at

3Basch E. Patient-Reported Outcomes – Harnessing Patients’ Voices to Improve Clinical Care. N Engl J Med 376(2):105-8 (2017). Accessed at

4Basch E, Reeve BB, Mitchell SA, et al. Development of the National Cancer Institute’s Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). J Natl Cancer Inst 106(9):dju244 doi:10.1093/jnci/dju244 (2014). Accessed at

5ParkinsonNet, a Dutch program for Parkinsons disease, is a model of multidisciplinary care for complex conditions. A description of the program is available at