Fifty patients were enrolled and completed the survey. Four participants were not enrolled due to: lack of cell phone ownership (2), declined consent (1), or did not have the required time available to complete the interview (1). The median age of participants was 38
years (range 20–53) and 56% were female. Twenty-two participants (44%) were from the Mbarara district. The remaining 28 participants were from a total of 10 other districts in Uganda.
Cell phone use practices and literacy
All participants reported cell-phone ownership. A sizeable minority (18%) used multiple cell phones in the past seven days, but most (80%) reported multiple cell phones in their household. Nearly half of participants (48%) use more than one cell phone carrier by way of owning multiple subscriber identity module (SIM) cards.
Most participants reported access to cell phones 24-hours per day (70%). The most common period without access was after sunset (26% of participants), when nearly one third of participants (32%) shut off their phones. All respondents reported access to their phones seven days per week.
Ninety and 44% of participants reported the ability to read and write Runyankole and English, respectively. Most participants (96%) receive and know how to open and access (90%) SMS messages. Notably, when asked, “Which of these methods are acceptable ways for your doctor to tell you about abnormal laboratory test results?” the three participants who reported they could not read Runyankole also reported acceptability of an SMS text messaging system for reporting of laboratory results. When asked specifically about their thoughts on SMS communication (“Imagine that your doctor wants you to know an important piece of information like an abnormal lab test. How would you feel if he sent you that information by SMS text message to your cell phone?”) These participants cited reliance on friends for family members for interpretation of results, for example:
"I would be very glad because I have broken the ignorance. This is a quick and a comforting way to talk to us and a clear sign that they care for us. If I get the message I call my treatment supporter to read for me the message."
Participants receive a median of 3–5 messages per week (range 0 – greater than 20). Most participants reported that they could receive SMS texts free of charge (87.5%, 29/35). In contrast, all participants (27/27) reported they were charged to send SMS messages. The median cost per message was $0.04/message (range $0.02 – 0.20).
Satisfaction with clinic laboratory result communications
Ninety percent of participants reported they usually learn about test results from their clinician at the following visit, while an additional 8% report they do not typically find out their results. While 37 of 50 (74%) participants reported that learning the laboratory result from the physician during the following visit was acceptable, 90%, 98% and 100% also found recorded voice message, phone calls, and text messages acceptable respectively (p
0.001 for all comparisons versus learning from physician). Though 82% reported they would return to clinic earlier if they were aware of abnormal test results, participants also reported returning to clinic is difficult because of transport costs (84%), personal illness (52%), work (18%) or family obligations (10%).
Privacy and confidentiality issues related to health communication
Ninety eight percent of participants had disclosed their diagnosis to at least one person and 78% (32/41) had disclosed to their primary partner. Although 90% reported they were not afraid that a cell phone message would disclose their HIV-status:four participants (8%) specifically listed a fear of breach of privacy related to cell phone text messaging about health:
"I don't see any worries because even the people that use my phone they have that use it with my consent and when am there seeing them."
"I don't have any worries because this is aimed at helping my health. I don't mind privacy. I have overcome stigma and am happy this way;"
"The problem might come to couples who have not disclosed to each other this might cause a conflict if the other partner sees the message."
"We have many friends who can easily pick your phone, check your inbox, and get to know your private information. It would be good to delete the SMS after reading."
When asked what the clinic could do to ensure confidentiality of the cell phone communication system, answers typically fell into one of four major themes:
i. Text message privacy is the responsibility of the patient (13 respondents):
For those who haven't disclosed they can delete the SMS after reading the message. The issue of privacy is largely the responsibility of the receiver;
ii. Clinic staff should maintain a reliable and secure database system (12 respondents):
You should delete/protect the database from where the messages are being sent from your system…
iii. Clinic staff should provide instruction on use of the system and risks of disclosure (13 respondents):
First ask the patient on his phone usage and then you agree on how it works. Explain to the patient the possible risks so that they are aware.
iv. Ensure anonymous messages (3 respondents).
When asked further about the use of a personal identification number system to protect health-related messages (“What if we required a password that only you would know that would be required to open the message? Would this help to make your results confidential or would this inconvenience you?”), 88% (44/50) responded positively. The remaining cited challenges about remembering the PIN and unnecessary inconvenience because they had disclosed to family members and therefore declined the need for increased privacy measures.
Acceptance of and preferences for cell phone text message communications
All participants reported that they would like to receive health-related communications via cell phone messaging and that an automated system of cell phone text messaging with information about test results at the clinic would be helpful. When asked about the benefits and risk of such a system, the majority 88% (44/50) discussed benefits of improved communication and overall clinical care:
"We at times come and if you don't ask the doctor he normally forgets to tell you but with an SMS it will help you know. At times your next visit might be a public holiday and you find the hospital closed."
"Most of us are dying out of ignorance so with a message we will quickly discover our status."
Others 12% (6/50) reported that such a system would decrease the cost of care:
"It will save the cost of transport because we come and we find nothing ready for almost four times of coming to the clinic and going with no achievement. So it would make us come when we are sure."
Though all listed benefits, a minority also expressed concerns about the system including disclosure 14% (7/50), illiteracy 8% (4/50), potential to increase stress 6% (3/50), technical issues 6% (3/50), and difficulty accessing transport 4% (2/50).
When asked to explain how they would feel personally about receiving a message on their phone with information about an abnormal test result, the majority (72%; 36/50) responded positively without reservation.
"It’s okay, because it’s quick and cost effective. It’s a better way to communicate when something is so urgent."
"I would feel fine by that because we normally come for the results after 3
months… I think this would be better to get us informed."
"This influences you to come to the clinic for consultation. This is a good way to communicate because it helps me know my status."
Some participants (26%; 13/50) expressed anxiety about learning about abnormal test values over the phone:
"It might scare you a bit but I would appreciate since he cares about me. I think this would help patients relate better with doctors, and I would act accordingly."
"It might scare me a little bit, I would like to know what else I can do, so I would come back to the clinic. I would tell a friend to help me relieve my mind…"
When asked, “Please rank from most important to least important to you the features of a text message about test results”, participants ranked i) specificity of message, ii) language, iii) privacy, iv) clarity, and v) length. Notwithstanding a preference for specificity, 24 participants (48%) prefer a direct to a pre-specified coded message (example for direct message: “Your laboratory tests are ready, please return to clinic” example of pre-specified, coded message: “ABCDEFG”).
When asked what worries they have about receiving messages, most (66%; 33/50) reported they had no worries:
"I don't have any worries because this is aimed at helping my health. I don't mind privacy. I have overcome stigma and am happy this way."
Three participants said they could be discouraged or startled by the result:
"It depends on the message if it is too bad that the sickness is beyond the doctor’s control. Otherwise I don't think this affects privacy since everyone knows my status and in case I don't understand the message then I can inquire."
Technical issues were a cause of worry for some participants (14%; 7/50):
"The only worry is when my battery is down and the message is urgent."
All participants favored a chance to respond to health communications with an opportunity to reply by SMS 84% (42/50), call back 50/50 (100%), and/or return to clinic 21/50 (42%).
When asked to describe a preferred message in their own words, 49 of 50 (98%) participants gave an example using words (at least one of “test”, “result”, “CD4”, “blood”, “treatment” or “clinic”), which could potentially reveal health-related information:
"I would like it short and clear. From the lab tests we took the results were not good come back to the clinic on this date."
Seven patients also specifically included a patient’s name in their example message:
"Mr X, from our lab tests you had abnormal results, but there is help"
The most preferred messages from a list of 8 pre-specified options were: i) “This is an important message from your doctor. You had an abnormal test result. You should return to clinic as soon as possible,”; ii) “You had an abnormal test result. You should return to clinic as soon as possible,” and iii) “Your doctor would like to talk to you. Please come to clinic.”