#Help cancer patients be better heard!
Globally, healthcare systems are transitioning to value-based healthcare (VBHC) where value to patients is put at the center of the focus.1 Patients’ voice is of critical importance in terms of measuring value to patients. In healthcare, this is usually captured using standardized and validated surveys, such as patient-reported outcome measures (PROMs). Although PROMs hold a lot of potential to capture patients’ experiences, their implementation is unfortunately not always perfect. Let’s take cancer as an example.
Cancer is a major cause of death worldwide, accounting for 10 million deaths alone in 2020.2 Research shows that cancer patients can increase their likelihood of survival by participating in Patient Reported Outcome Measures (PROMs) 3 to report on their health status. In practice, the response rate to the PROM surveys is significantly low4, which leads to poorer treatment choices and a decreased quality of life for patients.5
The Challenge: How can we use technology and data to increase the response rate to electronic patient-reported outcome measures (ePROMs) questionnaires by cancer patients?
What are Patient Reported Outcome Measures (PROMs)?
Patient-reported outcome measures (PROMs) are standardized and validated questionnaires that capture patients’ perspectives on how healthcare interventions impact their quality of life. PROMs help healthcare providers and payers undertand how a patient feels about his condition6, the care she is receiving, difficulties in everyday life as a result of the condition (pain, inability to perform certain tasks, mobility) as well as her progress.7 For decades, questionnaires were collected via the traditional pen and paper format, but PROMs are now increasingly collected electronically i.e. ePROMs.8
Today a variety of applications exist for different devices, including applications for smartphones, tablets, personal computers, web-based portals, and wearable medical devices. Research has confirmed that patients prefer to use ePROMs to traditional paper based PROM collections.9 This preference was even observed among patients with low computer literacy.10 Concrete examples of ePROM approaches for cancer patients can be found in the section "Technologies, solutions and data" at the bottom of this page.
Why are PROMs used?
Understanding patients’ experience is particularly important in cancer care, as cancer patients go through substantial physical, mental and social consequences due to the disease and the treatment.9 Most treatment-related side-effects occur in patients’ homes and outside hospitals despite time spent in hospitals for treatment. Research suggests that such consequences may be under-recognized and under-treated in oncology practice.7 The scientific evidence supporting the use of PROMs both on an individual and a population level is increasing, and has revealed a variety of benefits for patients and healthcare professionals.11
Data on PROMs is used during clinical care processes to guide patient-centered care and clinical decisions. Additionally, as PROMs are collected consistently and at regular intervals, PROMs can be used for a variety of analytical purposes such as to inform health services programmes, to plan and adapt health policies, to measure performance, for effective analysis and in quality improvement initiatives.12 Despite all these benefits of having cancer patients fill out PROMs regularly, actual response rates in daily medical practice are not as high as they should be. 13
PROMs benefits for patients:
increases patient satisfaction
improves patient-provider communication
improves overall quality of life
improves symptom management
leads to less frequent hospitalization and admission to the ER
enables continuation of chemotherapy
better survival rates.
PROMs benefits for healthcare professionals:
facilitates and improves communication between patients and healthcare professionals
increases awareness of patients’ wellbeing
facilitates patient participation and helps in shared medical decision-making with patients
enables discussion of more intimate issues
helps collect insights about most promising therapeutic approaches, thereby
potentially improving treatment choices in the future.
Your Context: Know the target audience, market and challenges
Our target group:
Your target group consists of cancer (all types) patients of all age groups, who find it difficult to regularly fill out their PROMs. According to Nguyen et al.4, cancer patients find it challenging to fill out PROM surveys because of these top 3 reasons:
Lack of time
Patient inability to complete PROMs and difficulty in using electronic devices
Perceived irrelevance of PROMs and their lack of value.
These three reasons are further explained by the fictional personas below:
Can you help them?
Lack of time
Physical & Technical inability
Perceived low value
Susan is 25 years old and has breast cancer. She recently received chemotherapy and luckily recovered well from her treatment and is now back to her usual routine. Although she agreed to participate in the ePROMs survey, her participation has been inconsistent as the notifications are too frequent and disturb her daily routine. In addition, she finds the questionnaire to be very long and burdensome.
David is 75 years old and suffers from colon cancer. He has been undergoing treatment and often feels weak. Despite his health condition, David agreed to regularly fill in the ePROM questionnaire as it would help him survive longer and also help other patients like him. However, he often feels too weak to type in the answers. He also finds it difficult to navigate as the user interface is not user-friendly and needs to ask his son for help.
Peter is 65 years old and suffers from lung cancer. Unfortunately, Peter often feels lonely as his wife recently died and his kids moved out a long time ago. He sometimes also feels a bit depressed and does not feel motivated to fill in the ePROM survey as he finds the questions to be both boring and repetitive. Moreover, he doesn’t see much value as his answers are seldomly followed-up by his doctors.
Technologies, solutions and data
Don't worry if your solution does not tackle all the pain points above. It's great if you can solve some or even one of them.
Here are some technologies and solutions that could help you build your prototype.
Please feel free to use your imagination and go beyond the below list.
Technology and solutions:
Here are the PROM questionaires from ICHOM14 which can help to build your prototype.
Senior Director Medical Affairs Oncology
Global Healthcare Transformation Consultant
International Project Consultant
Senior Data Scientist
1) Porter, Michael E. (2010). What is Value in Healthcare?. New England Journal of Medicine 363, 2477-2481, available online.
2) World Health Organization (2021). Information page about cancer, available online.
3) Ovretveit, John; Lisa Zubkoff; Eugene C. Nelson, Susan Frampton; Janne L. Knudsen and Eyal Zimlichman (2017). Using patient-reported outcome measurement to improve patient care. International Journal for Quality in Health Care 29(6):874–9, available online.
4) Nguyen, Hanh; Phyllis Butow; Haryana Dhillon and Puma Sundarescan (2020). A review of the barriers to using Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs) in routine cancer care. Journal of Medical Radiation Sciences 68 (2), 186-195, available online.
5) Chen, Jack; Lixin Ou and Stephanie J. Hollis (2013). A systematic review of the impact of routine collection of patient reported outcome measures on patients, providers and health organisations in an oncologic setting. BMC Health Services Research 13 (211), available online.
6) Basch, Ethan; Alison M. Deal and Amylou C. Dueck (2017). Overall Survival Results of a Trial Assessing Patient-Reported Outcomes for Symptom Monitoring During Routine Cancer Treatment. JAMA Research Letter 2017 318(2):197–198, available online.
7) Howell, Doris; Sean Molloy; Kelly Wilkinson; Esther Green; Kimberly Orchard; K. Wang and J. Liberty (2015). Patientreported outcomes in routine cancer clinical practice: a scoping review of use, impact on health outcomes, and implementation factors. Annals of Oncology 26 (9): 1846-1858, available online.
8) Jensen, Roxanne E.; Nan E. Rothrock; Esi M. DeWitt; Brennan Spiegel; Carole A. Tucker; Heidi M. Crane; Christopher B. Forrest; Donald L. Patrick; Rob Fredericksen; Lisa M. Schulman; David Cella and Paul K. Crane (2015). The role of technical advances in the adoption and integration of patient-reported outcomes in clinical care. Med Care 53(2):153–9, available online.
9) Peltola, Maria K.; Joel S. Lehikoinen; Lauri T. Sippola; Kauko Saarilahti and Antti A.Mäkitie (2016).. A Novel Digital Patient-Reported Outcome Platform for Head and Neck Oncology Patients-A Pilot Study. Clin Med Insights Ear Nose Throat 9:1-6, available online.
10) Mullen, Kristin H; Donna L. Berry and Brenda K. Zierler (2004). Computerized symptom and quality-oflife assessment for patients with cancer part II: acceptability and usability. Oncology Nursing Forum 31(5): 84–89, available online.
11) Rotenstein, Lisa S.; Robert S. Huckman and Neil W. Wagle (2017). Making Patients and Doctors Happier – The Potential of Patient-Reported Outcomes. New England Journal of Medicine 377(14):1309–12, available online.
12) Black, Nick (2013). Patient reported outcome measures could help transform healthcare. British Medical Journal 346, available online.
13) Nelson, Eugene C.; Elena Eftimovska; Cristin Lind; Andreas Hager; John H. Wasson and Staffan Lindblad (2015). Patient reported outcome measures in practice. British Medical Journal 350, available online.
14) ICHOM (International Consortium for Health Outcomes Measurement), accessed September 2021, available online.