By Romayne Gallagher
IAHPC App Reviewer
Connecting patients to their health care providers regularly, and in times of distress and escalating symptoms, is the ultimate use of technology. However, developing an app that allows ongoing assessment and communication with patients can cost $30,000 US or more, putting it out of reach for most programs in resource-constrained countries. mPCL (my Palliative Care Link) offers a way to extend the reach of a palliative care program: it is based on an open-source platform that can be customized, supported by ongoing services that begin at $250 US monthly.
I could not download the app as it is available only to patients and health care providers from the cancer institute in Tanzania, but there is one paper that describes the app1 and another that reports on a randomized control trial of the app in cancer patients.2
Dimagi, a for-profit social enterprise based in Massachusetts, USA, developed the app using open-source software technology suitable for resource-constrained settings. The company uses CommCare, a mobile platform designed for data collection, client management, decision support, and behavior change communication. The app can be customized to collect data for frontline health, agriculture, education, and other sectors. The data is sent to a cloud-based server or held until there is adequate signal. Dimagi provides online tools to analyze and make use of the data. A brief description of what is possible can be seen on this YouTube video.
Dimagi worked extensively with clinicians at the Ocean Road Cancer Institute in Dar es Salaam to develop different user interfaces for the patient, nurse, local health worker (LHW), and specialist.
During an admission to the cancer institute, the specialist develops a palliative care plan available for viewing by all health care providers. At discharge, the patient has the app loaded on their phone or borrows a phone from the hospital with the app installed. Twice weekly, the app on the patient’s phone prompts the patient to complete and submit the validated African Palliative Care Outcome Scale (POS) that has been translated into Kiswahili, the local language. This information is then available to the LHW, nurse, and specialist to review. If the POS shows escalation of symptoms or distress, the health care providers can intervene with a phone call or visit. The clinical record allows tracking of the plan over time. The app also has a phone link for patients to call in emergencies. Patients and caregivers can also find information about common cancer symptoms and their management in the app.
After the app was developed and field tested, a study was done to assess the app’s effectiveness—something that is rarely done.
Adult patients with incurable cancer were randomly assigned at hospital discharge to mPCL versus phone-contact POS collection for a study duration of up to four months. Each arm of the study comprised 49 patients. Comparison of baseline characteristics showed a higher discharge morphine use (p = .09) in the mPCL group compared with phone-contact and significant between-group differences in cancer types (p=.003). Proportions of deaths were near equal between groups. Overall, symptom severity decreased over time in both groups (p =.0001). Symptom severity was significantly lower in the phone-contact group (p =.0001); however, between-group change in overall symptoms over time did not vary significantly (p =.34). Care satisfaction was high in both groups. The paper concludes that for the control group, having a person phone the patient twice a week was an intervention itself; when combined with more disease burden in the app arm, this likely explained the lack of significant difference between the groups. The team is planning a larger randomized trial of the app to assess its clinical utility and cost-effectiveness.
The one catch in all of this: access to reliable cell phone service or the Internet is necessary, but is lacking outside of Africa’s major cities. Starlink, the satellite internet service, is starting service in Nigeria and Mozambique in the coming months. Its cost in developed nations puts it out of reach for almost all Africans. Perhaps Starlink will sell a general license for health facilities allowing multiple users so a loaner phone could be used in rural areas to facilitate ongoing communication with patients who need palliative care. As we all know, suffering is lessened when it is shared and vastly improved with access to evidence-based therapy.