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Wireless Technologies for Monitoring and Adherence Panel Nov. 15-19

By Sarah Arnquist | 15 Nov, 2010 Last edited by Robert Szypko on 02 Aug 2011

GHDonline is please to host an online panel this week on using wireless technologies to monitor and improve patient adherence to HIV therapies.

Our panelists, Dr. Jessica Haberer, and Rowena Luk, a senior engineer, will off some initial thoughts this morning and then we look forward to a robust discussion.

The panel will occur simultaneously in the A&R and Health IT communities.

Initial questions:

What ways can technology improve adherence monitoring and/or intervention?

What are limitations of technological approaches?

Is real-time adherence monitoring and intervention feasible outside the research setting?

What opportunities remain under-explored?

Replies

 

maria zolfo Replied at 8:34 AM, 15 Nov 2010

Dear Jessica and Rowena, which is the GHD internal policy for documents sharing? There is avery good publication available on Lancet 09/11/10 http://www.ncbi.nlm.nih.gov/pubmed/21071074 (and the comment by Stringer http://www.ncbi.nlm.nih.gov/pubmed/21071073) which deserves surely to be aknowledged. Is the sharing of original papers allowed or are there copyrights issues?
Kind regards, Maria Zolfo

Sarah Arnquist Replied at 9:00 AM, 15 Nov 2010

Maria,

Thanks for referencing those papers in the Lancet.They could be recommended reading for this debate. We can't publish the papers on the site, but I will include the references and links here.

Lester RT, Ritvo P, Mills EJ, et al. Effects of a mobile phone short message service on antiretroviral treatment adherence in Kenya (WelTel Kenya1): a randomised trial. Lancet. 2010.
http://www.ncbi.nlm.nih.gov/pubmed/21071074

Chi BH, Stringer JS. Mobile phones to improve HIV treatment adherence. Lancet. 2010.
http://www.ncbi.nlm.nih.gov/pubmed/21071073

Jessica Haberer, MD, MS Replied at 9:33 AM, 15 Nov 2010

Hi All and welcome to our panel on using wireless technologies to monitor and improve patient adherence to HIV therapies.

To introduce myself, I’m an internist and HIV researcher at Mass General Hospital and have been working on wireless technology for antiretroviral therapy (ART) adherence monitoring for the past couple of years in rural Uganda. I became interested in a wireless approach to adherence monitoring because missing just a few days of ART can cause the loss of ART efficacy, and most people in developing settings really only have access to one regimen of drugs. Unfortunately, the currently used measurements (i.e. self-report during clinic, clinic or home-based pill counts, standard electronic monitoring caps, pharmacy refill) don’t typically provide adherence data in a timely enough manner to intervene before such dire consequences take place. Real-time approaches are therefore needed.

My colleagues and I are looking into two technologies: self-reported adherence through mobile phones (previously discussed here on GHDonline http://www.ghdonline.org/adherence/discussion/cell-phone-intervention-improve...) and wireless adherence medication containers. We published results from these trials in the journal AIDS and Behavior (“Challenges in Using Mobile Phones for Collection of Antiretroviral Therapy Adherence Data in a Resource-Limited Setting”, Haberer et al) http://www.ncbi.nlm.nih.gov/pubmed/20532605 and (“Real-time Adherence Monitoring for HIV Antiretroviral Therapy”, Haberer et al) http://www.springerlink.com/content/4012134j345l2825/fulltext.html

What are the best ways in which technology can improve adherence monitoring and/or intervention?
Self-reported adherence is notoriously unreliable for two main reasons: recall bias and social desirability bias. In other words, people forget their behavior rather quickly, especially if they are trying to remember what they forgot. They also want to present themselves in the best possible light, particularly to authority figures like healthcare workers. We hypothesized that automated telephony might overcome these two biases because the data could be collected frequently (i.e. before the patient forgets his or her behavior) and the relative anonymity might lessen the pressure to overestimate adherence.

We piloted both interactive voice response (IVR) and SMS in a group of 19 caretakers of HIV-infected children taking ART who owned their own cell phones. We used IVR because of high illiteracy rates in our population and SMS because of its ease of use and growing popularity. Dimagi in Boston (www.dimagi.com, where the other panelist Rowena works) did our SMS programming and Yo! Voice Solutions and Software Development in Kampala (www.yo.co.ug) did our IVR programming and provided a gateway to the MTN network.

We have also been using the Wisepill wireless adherence monitor (www.wisepill.com) to learn about adherence problems as they are happening. This device is a pill container that creates a date and time stamp every time it is opened and transfers this information to the web via GPRS or SMS. We favor Wisepill over the IVR and SMS self-report because it is a passive and objective data collection system and it allows for the earliest possible identification of adherence lapses.

2. What are the limitations of technological approaches?

We've come across quite a few challenges. They are all surmountable, but they warrant some discussion, as I don't imagine we're the only ones having them. The poor results from the first IVR and SMS trial surprised us. We had done thorough individual training sessions in a highly motivated population with cell phone experience and had a very simple algorithm with content in the local language. Our challenges highlight the importance of pilot testing within the target population, as well as the difficulties that may arise when dealing directly with the patient who may not be educated, skilled, and/or motivated. Many other mHealth projects target community health workers, nurses, or physicians, who typically have more education, skills, and motivation, although every population has its unique challenges.

We’ve been very pleased with Wisepill, although we have definitely worked our way up the learning curve. We overcame battery failures fairly easily by manipulating the sleep mode, and we were able to upgrade our forwarder to avoid lost signal transmission. One unexpected problem occurred right after the pilot finished when all devices stopped working for unclear reasons. It took us a week to figure out that we hadn’t put any airtime on the Wisepill SIM cards in six months. We were monitoring the airtime amounts, but didn't realize that they would expire without adding additional minutes.

We are midway through revised and expanded study of both IVR and SMS self report and Wisepill involving 46 caregivers and 46 adults. One major improvement to the IVR and SMS protocols is “just in time” training in which our research assistants receive SMS alerts when individuals have multiple failed IVR or SMS responses. We attempted to institute an automated airtime incentive for proper responses, but unfortunately some hardware problems and human error prevented it from working. Additionally, we keep the questions short, ending with a clear description of what information is desired. Importantly, we also gave participants cell phones and solar chargers. For the Wisepill, we have also added HIV viral load testing during the adherence interruptions to see if each lapse has potential clinical consequences, as well as qualitative interviews to characterize the interruption for intervention development.

We have continued to have some challenges with individual understanding of IVR and SMS prompts, but they are much better than our first go round. There have also been some problems with the execution of the call and text algorithms, which primarily reflect miscommunication between non-techies like me and the very capable engineers with whom we work.

Data management has been another challenge. We didn’t put enough time and effort into developing reporting systems prior to beginning data collection. Data management is not a big problem with small numbers of participants; however, we plan to enroll over 500 participants in the next 3 years and the mounds of data are daunting. Our partner at Wisepill has been wonderful in customizing reports, but it’s taken a while to figure out how best to sift through all the data and find which information is really needed for real-time action.

Additionally, cell phone ownership and network availability are not as high as originally thought. We have been surprised by how many people really had little to no idea how to use a cell phone. Similarly, we have had many more challenges with stored and back filled data through the Wisepill device than anticipated. We’ve seen maps showing extensive cell phone coverage, but I have no idea where they got their data. We’ve been creating our own maps with GPS and the number of bars present on MTN to get a better sense of what kind of coverage is really out there.

3. Is real-time adherence monitoring and intervention really feasible outside the research setting?
Yes, but we should never take anything for granted when implementing even what might seem like straightforward technology in a novel setting. We have been extremely humbled by the challenges in collecting individual-level data. One of our main goals in collecting the self-reported adherence data has been to establish proof-of-concept that we can get reliable individual-level data in a standardized, automated way. We hope to then integrate Wisepill with IVR and SMS so that we can verify lapses and direct interventions, which is where our work is headed in the next couple of years. The preliminary work I’ve just described has taught us a great deal about designing such systems.

mHealth is great, but the enthusiasm needs to be tempered with data on reliability, validity, and outcomes. Don’t get me wrong, I’m a huge fan of mHealth. I’ve just been amazed by all the positive reports out there with little data to back them up and few reports of challenges. I hear stories like mine when chatting informally with colleagues, but I worry that the broader audience isn’t hearing them. Several rigorous studies are starting to appear as the field matures, but more are needed to make sure we’re adding value to healthcare delivery. Additionally, engineers and NGOs typically focus on product development and implementation, rather than systematically recording and analyzing data along the way, as we researchers do. The former approach is more flexible and better for product optimization, while the later is better for judging impact, but often very time-consuming and expensive. Both perspectives are extremely valuable, and we can definitely learn from each other. I would really like to hear from others about their experiences and challenges confronted. I would also like to know what people see as the primary barriers to doing more trials using these technologies.

Thanks for reading. I look forward to your feedback and questions.

Rowena Luk Replied at 9:37 AM, 15 Nov 2010

Hello everyone! Allow me to introduce myself: I'm one of the senior engineers at Dimagi, in which capacity I've led many of our mobile health programs, particularly in the text messaging space. Recently, we've witnessed a groundswell of new interest and projects in the area of remote adherence monitoring and intervention technologies, and have worked directly on adherence studies in the United States, Kenya, and Uganda. We are also currently exploring opportunities in this area in India and Vietnam.

So, what is it about mobile technology that has breathed new life into the problem of adherence monitoring and intervention? I'm going to focus my opening statement on some of the new opportunities which these innovations present. Namely:

* Real-Time Feedback: devices can send signals and provide feedback instantaneously, making operant conditioning to improve adherence a genuine possibility.
* Personalized: devices can store user data and intelligently tap into rich information networks and media in order to be engaging, educational, and prevent user fatigue.
* Networked: devices are connected into larger communities of healthcare providers, but also friends and family. As such, they can provide both negative social motivators ("your doctor will call you if you do not take your pills on time") as well as positive social motivators (support groups and role models).

Of course, there is no shortage of open questions about how to make the above work. How good do our adherence measurements have to be in order to make operant conditioning feedback effective? Given greater user and context information, how do we make adherence interventions relevant and avoid 'nagging'? At the same time, I'm very much interested in eliciting this community's blue-sky ideas of what might be possible and what some of the most promising new directions are.

Rowena

Paul Gardner-Stephen Replied at 4:55 AM, 16 Nov 2010

Hello all,

My comments are primarily in response to Jessica Haberer's experiences with cell phone networks and connectivity issues.

I am the founder of the not-for-profit Serval Project, Inc. (servalproject.org), and we have developed software that can run on certain models of cell phone that allows them to self-organise into cell phone networks without relying on towers, infrastructure or requiring credit with any company to operate on the mesh network that they create.

The range is only a few hundred metres, however, the phones can relay for more distant phones, thus allowing the coverage of much greater territory. Also, the phones can be configured to collect data, and then automatically relay it to passing phones, or to authorised computer systems they come into contact with, e.g., when they visit their local health clinic.

Alternatively or as a supplement, relay devices can be installed, so that individual communities can be linked together. Naturally this has benefits beyond health care, but it seems to me that health care and HIV retention schemes could also benefit greatly from this technology that we are making freely available and open source.

We would be delighted to work with yourselves or any one else who would like to make use of our technology and see it used to support health or other development goals.

Dr. Paul Gardner-Stephen.

Jessica Haberer, MD, MS Replied at 8:29 AM, 16 Nov 2010

Cross-posted from Adherence and Retention:

Hi Paul,

I love your idea! Can you give us some more specifics on which types of phones are necessary? Does it work for both calls and SMS? Are there network restrictions? What are the costs? Where are you using it and do you have data on reliability?

Thanks!
Jessica

Sarah Arnquist Replied at 8:45 AM, 16 Nov 2010

**cross post from Adherence Community**

From Sarah Jenny Bleviss:

"Hello all,

Thanks so much for this wonderful discussion. I am a graduate student at New York University's Interactive Telecommunications Program where I am focusing on technology for HIV/AIDS work. I would love to remain informed on the work you are doing. I am in the process of doing initial research for my thesis project. I am very much interested in utilizing various technology, though particularly mobile/SMS and web, in HIV prevention and adherence/retention.

Attached is a link to a project I worked on last semester that used GPS functionality on smartphones (Android, iPhone) to provide the closest services for sex workers within a fifty block radius in New York City.

Feel free to contact me directly -

All best,
Sarah Jenny"

This reply has an attached resource: "PROS Network Services Finder".
View this post online:
<http://www.ghdonline.org/adherence/discussion/wireless-technologies-for-monit...>

REPLY FROM: Jessica Haberer, MD, MS

Hi Sarah,

I think the use of mobile phones, especially by camera or video, has quite a bit of potential for modified DOT. In addition to the Hoffman paper, I'm aware of these two, which both describe projects in Washington state:

Videophone utilization as an alternative to directly observed therapy for tuberculosis. Krueger et al. Int J Tuberc Lung Dis. 2010 Jun;14(6):779-81.

The application of telemedicine technology to a directly observed therapy program for tuberculosis: a pilot project.
DeMaio et al. Clin Infect Dis. 2001 Dec 15;33(12):2082-4.

I think there has also been some similar work with the San Diego County and the Oregon Department of Human Services.

Additionally, you may be interested in the considerable amount of recent controversy on the use of DOT for HIV ART. On my review of the literature, it seems like DOT or modified DOT can be very helpful in at risk populations, but not necessary for all comers. I'd recommend looking at these articles, among others:

1. Modified directly observed therapy to improve HIV treatment outcomes: little impact with potent, once-daily therapy in unselected antiretroviral-naïve patients. Bangsberg DR. Curr HIV/AIDS Rep. 2009

2. Directly observed antiretroviral therapy: a systematic review and meta-analysis of randomised clinical trials.
Ford et al. Lancet. 2009 Dec 19;374(9707):2064-71.

3. Randomized controlled trial of trained patient-nominated treatment supporters providing partial directly observed antiretroviral therapy. Nachega et al. AIDS. 2010 Jun 1;24(9):1273-80.

Best of luck with your work!
Jessica

A/Prof. Terry HANNAN Moderator Replied at 9:21 AM, 16 Nov 2010

Paul, good to see your inputs and the responses. I am in Italy until the 8th December. Terry

Dr Terry J. Hannan
Consultant Physician
Clinical Associate Professor School of Human Health Sciences, University of Tasmania

Sarah Arnquist Replied at 9:25 AM, 16 Nov 2010

**cross post from adherence community**

Jessica Shull replied to the discussion "Wireless Technologies for Monitoring and Adherence Panel Nov. 15-19" in the Adherence & Retention community.

Reply contents:
"Hi all,

As this is another relevant thread, I thought I would add this post from the ICT4CHW site:

Brian Nejmeh Nov 15 10:02AM -0500 ^

World Vision (WV) uses the Core HIV and AIDS Response Monitoring System (CHARMS) to track and measure core indicators related to individuals with HIV and AIDS within the communities WV serves. WV uses community care coalitions of volunteer caregivers to care for orphans and vulnerable children (OVC). Current CHARMS data collection involves the registration of caregivers, households and OVC. Data is manually collected by caregivers about OVC during monthly home visits and manually aggregated semi-annually.
This research project developed a software application (using JavaRosa) that runs on a low-cost cell phone to automate the CHARMS data collection, alerting and reporting process. The mobile application allows for caregivers to record CHARMS data using the mobile application and transmit the data in real-time using an SMS-based wireless communication service. The application also includes real-time web and email based reporting and mobile phone alerting based on key events (food shortage, OVC not visited).


During the summer of 2009, a field study was conducted in Zambia involving 10 caregivers and approximately 300 OVC. The system allowed for the registration of 300 OVC and 200 households. A total of 145 home visits were recorded via the mobile application. Extensive assessment data was collected during the field experience proving mostly positive. WV is presently evaluating the merits of broadly deploying a mobile phone solution for field data collection based on the success of the field study.

The caregivers who participated in the field experience were half male and female. Their education ranged greatly from: 30% primary school, 50% secondary school and 20% college. 80% of the caregivers indicated they used a cell phone to make a call prior to beginning this project. 60% of caregivers indicated they used a cell phone to send a text message prior to beginning this project.

Our three day training session used the translation abilities of a caregiver. The primary challenge of the training proved to be linking the manual approach to the mobile phone solution. Walking through each of the forms along with role play activities proved to be effective. Additionally, pairing caregivers based on comfort level of the application allowed sharing of knowledge and understanding.

During our field experience, we observed a negligible difference between the effort required between the manual approach and the mobile phone process for completing registration and home visits. The report generation process using the automated system drastically increased both precision and detail and cut the time to compile the reports significantly from the manual approach. Further, the reporting feature of the automated system allows for new reports of greater analysis and provides flexibility of reporting with the specific nature of the stored data.

Surveys given throughout the pilot revealed a positive attitude and experience with the mobile application. 100% of the caregivers believe the cell phone will keep information safer and more confidential than the paper method. 100% of the caregivers believe CHARMS forms can be completed quicker using the mobile application. 100% of the caregivers would recommend the continued use of cell phone to record CHARMS data for reasons ranging from time savings (90%), ease of use (70%) and more interesting to use (40%). The caregivers said the cell phone application either had a very positive (80%) or positive (20%) impact on the quality of their home visit.

The GSM wireless communications network proved to be widely available and reliable for the regions of Zambia where the field experience was conducted. The average wireless communications cost to complete a mobile transaction was about $0.15.

One key aspect to the mobile system is the ability to send data in real time. During the pilot, an alert email was sent to WV staff if a caregiver selected a food shortage during a home visit. Properly implemented, this system could track various other emergency issues to provide immediate response by WV staff. Similarly, an administrative email was sent to WV staff if a child had not been visited within a given number of days to help develop accountability to the caregiver position. We also built a Bluetooth-based desktop synch utility that allowed the data that was not transmitted over SMS still residing on the Nokia 3110 mobile phone to be sent over the Internet. This proved to be very valuable as it provided an option to send now (via SMS) or send later (via desktop Internet app) the data for each form.

Using the mobile platform opens a wide range of potential uses in the future. Health clinics could integrate with the system allowing for OVC referrals, appointments, and rapid response in emergencies. Similar to clinical algorithms is the notion we termed *support algorithms*. Such algorithms would allow caregivers to more objectively answer questions. For example, CHARMS asks the question: “Is the household poor?” Presently, the caregivers do not consistently answer this question using the same criteria. We are exploring the possibility to define criteria that would allow caregivers to consistently and objectively answer questions. Finally, the integration of GPS could potentially allow WV to analyze trends and geographic coverage of programmes and OVC."

--
View this post online:
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Anat Rosenthal, PhD Replied at 11:57 AM, 16 Nov 2010

**cross post from adherence community**

Hi all,

Thanks for a wonderful discussion! Jessica and Rowena, I was wondering what you think about the possibility of scaling up these approaches, and the considerations/limitations of such a process (for both patients and reporting systems).

Many thanks,
Anat

Rowena Luk Replied at 1:23 PM, 16 Nov 2010

Dear Paul,

Thanks for sharing your work. That's quite a novel solution to the problem of low signal strength! I'm curious to hear any lessons learned from extending the platform onto cellphone models which are not as open as Android. Other approaches that our team have used include installing cellphone signal boosters in order to extend the range of the cellular network in a particular region, or, when the focus is on one particular device or modem, upgrading the antenna. When we talk about using an individual's personal cellphones in order to send medication reminders, there's also no underestimating the resiliency which people demonstrate in finding places with good reception, so that they themselves can make or receive phonecalls.

Dear Sarah, glad to hear of your interest, I'm actually familiar with a few of the graduates of your program doing interesting work at the intersection of new media, health, and technology.

Cheers,
Rowena

Joaquin Blaya, PhD Moderator Replied at 3:30 PM, 16 Nov 2010

Jessica,
Using wisepill as you mentioned seemed really interesting and amazing that you were able to get it to work in remote settings. I went on their website and noticed that you fill a week's worth of pills.
Who would do the refilling every week?
What have been the costs of using it?
Do you think that this would work in larger scale i.e. hundreds of patients?
Do you see this company being interested in international markets such as sending many of these to Africa or Latin America?

Looking at SMS or voice systems, Hamish Fraser and I wrote a systematic review of the impact of eHealth and mHealth in developing countries. There was a section on Patient Reminder Systems and another on Patient Tracking Systems which showed the results of 7 different systems in these two categories. I'm attaching the full article here. For the Patient Reminder Systems both systems found that higher attendance or treatment completion rates in South Africa and Malaysia.

Attached resource:
  • Evaluations of the Impact of eHealth Technologies in Developing Countries: A Systematic Review (download, 118.2 KB)

    Summary: Jessica,
    Using wisepill as you mentioned seemed really interesting and amazing that you were able to get it to work in remote settings. I went on their website and noticed that you fill a week's worth of pills.
    Who would do the refilling every week?
    What have been the costs of using it?
    Do you think that this would work in larger scale i.e. hundreds of patients?
    Do you see this company being interested in international markets such as sending many of these to Africa or Latin America?

    Looking at SMS or voice systems, Hamish Fraser and I wrote a systematic review of the impact of eHealth and mHealth in developing countries. There was a section on Patient Reminder Systems and another on Patient Tracking Systems which showed the results of 7 different systems in these two categories. I'm attaching the full article here. For the Patient Reminder Systems both systems found that higher attendance or treatment completion rates in South Africa and Malaysia.

    Source: Rockefeller Foundation

    Keywords: Adherence, expert panel, Mobile Devices, wireless technologies

Rowena Luk Replied at 7:34 PM, 16 Nov 2010

Dear Anat,

This is a difficult question to answer in only a paragraph or two, but it's great one, and timely. mHealth projects enjoy an excess of pilot projects with few actually rising to the challenge of scale.

First, I don't think there is a blanket answer to these questions, for many reasons not the least of which is that there are so many different kinds of interventions being used in so many different contexts. Apart from text message reminders, for example, there are wireless pill caps which can trigger a phonecall if pills are not taken (such as the Wisepill device Jessica mentioned), systems which address the end-user cost barrier by relying on 'flashing' (http://happypill.socialrange.org/), and lower-cost RFID-based pill caps (http://med-ic.biz/), to name just a few. Further, there is a relevant distinction to be drawn between interventions that promote adherence versus those that effectively monitor it, since the opportunities and challenges are different.

That said, one method of promoting patient adherence wirelessly which has enjoyed a lot of activity recently are the text messaging reminder interventions, in large part because they can be applied uniformly across existing owners of mobile phones and don't run up against the compatibility issues of mobile phone applications nor the cost of phone calls. We've enjoyed working on projects incorporating such an approach for several hundred to several thousand users, including large, multi-country randomized clinical trials.

Taking a working process from pilot to scale isn't a direct translation, however, and there are many questions to be answered along the way. Building a system intended for use by different administators over time is substantively different from builing a one-off study. In particular, challenges include figuring out exactly how the information from these measurements gets integrated into the larger health information system, and what kind of data in what format are actionable by healthcare organizations and not just individual study administrators. There is also the challenge of filtering out the simplest, key interventions for large-scale role-out, and then building the capacity within countries and health organizations to effectively manage such programs in a sustained manner.

Rowena

Jessica Haberer, MD, MS Replied at 9:27 PM, 16 Nov 2010

Hi Joaquin,

The Wisepill holds roughly 60 small pills or 30 large pills. The inserts can have 2 or 7 compartments, or you can remove the insert entirely and use blister packs. So, the device can hold any where from 1 week to 1 month worth of medication, depending on the size and number of pills. For our study, most participants are on a twice daily 3-drug combination pill, and they can fit a month's worth of pills in the device. Also, there is a bag version of Wisepill for use in children who often require multiple medications in liquid formulation. When a refill is needed, the participants do it themselves and we haven't had any problems. We do go over proper refilling procedures when enrolling participants in the study.

The cost of the Wisepill device is quite expensive at the moment (US$185); however, the devices are made one-by-one by the manufacturer and do not reflect any economies of scale. Once he can mass produce the device, we estimate it will cost roughly US$20. Additionally, we have to pay for the data transmission (SMS) and hosting fees, which run about $5 per device per month.

We are currently moving to scale with this project. We have 92 participants on it right now and will start expanding in early 2011. We have funding for nearly 1,000 participants, which we plan to enroll over the next few years. Our main challenges will likely arise in data management and human resource allocation, and we are actively working on protocols to address these issues.

Wisepill is based in Cape Town, South Africa, but they already export to Europe and the US. I'm not sure about Latin America, but I see no reason why not.

Thanks for the review on eHealth and mHealth in developing countries! I look forward to reading it.

Regards,
Jessica

Jeff Rafter Replied at 8:23 AM, 17 Nov 2010

Great discussion!

In Malawi, we (SocialRange and University of North Carolina) have an upcoming study that will test our system called HappyPill which combines adherence monitoring and reminders for use in PMTCT environments (sample size: about 500 pregnant women). The system relies on patients self-reporting their doses by "Flashing" the hospital using their mobile phone and getting reminders/followup when they miss.

Flashing/beeping/missed calling, refers to the method of dialing a number and then hanging up before the call is answered. This approach is commonly used to communicate simple information like “call me back”, or “I arrived ok” without having to spend money on a phone call or text message (SMS). Unlike other mobile phone based reminder systems, which tend to rely on SMS or voice calls, flashing costs the patient and the clinic nothing and hence can be easily replicated and scaled.

If you want to try out our US demo from our mHealth poster, call +1-234-738-0907 and hang up (It won't answer). If you are outside of the US this may charge you for an international call (1 minute) but it varies by country. For the study we will have local numbers in Malawi.

We are looking for other environments to test out this approach. And we are very open to comments and suggestions as we try this out.

Sarah Arnquist Replied at 8:34 AM, 17 Nov 2010

Sharada Prasad Wasti replied to the discussion "Wireless Technologies for Monitoring and Adherence Panel Nov. 15-19" in the Adherence & Retention community.

"Dear All,
It was wonderful and facinating discussion. Nearly a decade, I have been working with HIV prevention and treatment programme in a developing country and at a moment i am doing research on adherence of antiretroviral treatment. Couples of issues came in the study and patients were expecting some sorts of promoters/facilitators or reminder for good adherence.

How applicable of this technology where is no regular power supply, telecommunication developed? How about the cost effectiveness of this technology?

Could you explain this my wondering questions?
Cheers,
Sharada

Jessica Haberer, MD, MS replied to the discussion "Wireless Technologies for Monitoring and Adherence Panel Nov. 15-19" in the Adherence & Retention community.

Reply contents:
"Hi Sharada,

I really appreciate your question about implementing technology where the power supply is unreliable. Power has definitely been an issue for our projects in Uganda. It goes off frequently, but we have the benefit of good access to back-up, gas-powered generators. We have also been using solar chargers for the cell phones with a great deal of success. I've heard the quality of the solar chargers is quite variable, but we have been able to get roughly a week's worth of charge for a standard "candy bar" Nokia phone. The solar chargers cost about $17, and I could get you the manufacturer's name if you're interested (I don't have the information on me at the moment). Our Wisepill devices have a battery life of 3-4 months, so intermittent power hasn't been a major issue. We have lost a number of batteries due to power surges while recharging, however, so I would recommend a good surge protector.

We haven't done formal cost-effectiveness analysis of Wisepill yet, because we're still working on establishing effectiveness. That said, we've done some back-of-the-envelop calculations and estimate wireless adherence monitoring and intervention could be accomplished for US$20 to $30 per year. While not cheap, this cost is in the range of CD4 monitoring. Personally, I find little benefit of CD4 monitoring beyond initiation of ART and would much rather see the money go toward adherence monitoring and support.

Text reminders have lower cost and evidence is coming out on their effectiveness (see Richard Lester's recent posting of his RCT in Kenya), so I imagine a cost-effectiveness analysis would be quite encouraging. I'm not aware, however, of any formal analyses in this area to date.

Regards,
Jessica"


Rowena Luk replied to the discussion "Wireless Technologies for Monitoring and Adherence Panel Nov. 15-19" in the Adherence & Retention community.

Reply contents:
"Dear Sharada,

Power and signal strength are both important issues to consider, especially when we talk about reaching the last mile with these interventions. I would hypothesize that one of the reasons for the remarkable popularity of the mobile phone the world over is its built-in resiliency to short-term outages. Dedicated generators and solar chargers are common solutions, as Jessica points out. http://www.dlightdesign.com, for example, incorporates solar panels with a battery that acts as a charge controller, as well as a light and a cell phone charger.

Another thing going for mobile phone solutions is that if we leverage devices that people already own, we can tap into their amazing resiliency for keeping such things charged. For example, it's quite common in sub-Saharan Africa or Afghanistan to have a communal battery in a village, which someone brings to the larger city for charging once a week. Such a battery can be sufficient to charge many of the phones in use in an otherwise powerless village. Implementing such a battery-charging program would be a considerable feat for any health agency, but the fact of the matter is that villages are already self-organizing to make this possible.

Lack of signal strength is also a tricky issue, which I touch on briefly in the previous post. I'll make two additional points. First, the availability of cell phone signals, and concurrently GPRS (data), is exploding, and many governments have in place policies to provision the most rural areas (and not just the most lucrative) with connectivity. Another approach is to use custom applications running on the mobile phone itself, instead of a pure SMS/text messaging platform, since applications can cache data until whenever connectivity is available, even days or weeks later.

As to cost effectiveness, this again is something that will vary by country and by intervention. Text messaging, for example, is extremely cheap in India and almost universal in the Philippines, whereas in Peru prices on some networks can skyrocket. Another factor to consider is the volatility of prices in this sector: we have built technologies for 120 USD devices whose cost dropped in half over the course of a year. I agree with Jessica that there is an impressive lack of good data on cost-effectiveness for these interventions, probably because we're still in the process of evaluating health outcomes for many mHealth projects and the two are interrelated.

Rowena

A/Prof. Terry HANNAN Moderator Replied at 12:28 PM, 17 Nov 2010

Are Evelyn Castle (Nigeria) and Daniel Kaiya on this list as I believe
they will have a lot to add to this discussion.
1. E. Castle: eHealth Nigeria:
http://www.youtube.com/watch?v=UIpqE5WoufE
2. Daniel Kaiya Pakistan: http://www.youtube.com/watch?v=U7RoBIO1xaU

Terry Hannan

Jessica Haberer, MD, MS Replied at 9:49 PM, 17 Nov 2010

Hi Jeff,

I believe I spoke with your colleague Mike McKay at the mHealth Summit. I think this is a great project; however, my main concern is that people won¹t adhere to the flashing, even if they adhere to the pills. Have you thought about incentivizing participation? I know that adds expense, but even low lost incentives like lotteries have been shown to make a difference.

Regards,
Jessica

Jessica Haberer, MD, MS Replied at 10:12 PM, 17 Nov 2010

Hi Terry,

Thanks so much for the links you posted. The OpenMRS programs in Nigeria and Pakistan sound fantastic. I was especially excited to see the mobile OpenMRS in Pakistan. Do you know if OpenMRS has had documented, beneficial effects on patient adherence and/or retention in either program? Are there any plans to link OpenMRS with SMS? I am not aware of any currently available APIs to enable this functionality yet and have actually been looking into it quite a bit lately, but would love to hear if you or anyone else in the GHDOnline community has more information on it.

Thanks,
Jessica

Joaquin Blaya, PhD Moderator Replied at 10:26 PM, 17 Nov 2010

Hi Jessica,
We've talked about this together, but I thought I would send it to the community. Our company in Chile has developed a small module within OpenMRS to send text messages to a specified group of patients, however, it can't receive responses back from the users. Also, by beginning of next year we plan to connect OpenMRS to ODK voice to enable automated voice messages from OpenMRS. We're planning on creating a commercial system to monitor and promote self-care among diabetic patients, but if others are interested in the system for other purposes as well, feel free to contact me.

Joaquin

Attached resource:
  • Information Systems for Patient Follow-Up and Chronic Management of HIV and Tuberculosis: A Life-Saving Technology in Resource-Poor Areas (external URL)

    Link leads to: http://www.jmir.org/2007/4/e29/

    Summary: Background:
    The scale-up of treatment for HIV and multidrug-resistant tuberculosis (MDR-TB) in developing countries requires a long-term relationship with the patient, accurate and accessible records of each patient’s history, and methods to track his/her progress. Recent studies have shown up to 24% loss to follow-up of HIV patients in Africa during treatment and many patients not being started on treatment at all. Some programs for prevention of maternal–child transmission have more than 80% loss to follow-up of babies born to HIV-positive mothers. These patients are at great risk of dying or developing drug resistance if their antiretroviral therapy is interrupted. Similar problems have been found in the scale-up of MDR-TB treatment.

    Objectives:
    The aim of the study was to assess the role of medical information systems in tracking patients with HIV or MDR-TB, ensuring they are promptly started on high quality care, and reducing loss to follow-up.

    Methods:
    A literature search was conducted starting from a previous review and using Medline and Google Scholar. Due to the nature of this work and the relative lack of published articles to date, the authors also relied on personal knowledge and experience of systems in use and their own assessments of systems.

    Results:
    Functionality for tracking patients and detecting those lost to follow-up is described in six HIV and MDR-TB treatment projects in Africa and Latin America. Preliminary data show benefits in tracking patients who have not been prescribed appropriate drugs, those who fail to return for follow-up, and those who do not have medications picked up for them by health care workers. There were also benefits seen in providing access to key laboratory data and in using this data to improve the timeliness and quality of care. Follow-up was typically achieved by a combination of reports from information systems along with teams of community health care workers. New technologies such as low-cost satellite Internet access, personal digital assistants, and cell phones are helping to expand the reach of these systems.

    Conclusions:
    Effective information systems in developing countries are a recent innovation but will need to play an increasing role in supporting and monitoring HIV and MDR-TB projects as they scale up from thousands to hundreds of thousands of patients. A particular focus should be placed on tracking patients from initial diagnosis to initiation of effective treatment and then monitoring them for treatment breaks or loss to follow-up. More quantitative evaluations need to be performed on the impact of electronic information systems on tracking patients.

    Source: Journal of Medical Internet Research - JMIR

    Publication Date: October 22, 2007

    Language: English

    Keywords: EMR, Medical Information Systems, Monitoring & Evaluation, OpenMRS, Presentations & Articles, Software

Michael Chung Replied at 8:35 AM, 18 Nov 2010

Hello,

Thank you for the interesting discussion around the use of wireless technologies and adherence. I just wanted to add my two cents from our work on adherence and retention at the University of Washington in Nairobi, Kenya and in collaboration with Rich Lester at the University of British Columbia.

My interpretation of how and why cell phone text messaging works is that it strengthens and promotes a therapeutic relationship between health providers and their patients. I do not think the value of the cell phone is in its use as an electronic reminder or an alarm device. In Rich's study, providers sent a simple text message which could be translated as "how are you", to which patients were expected to reply "good" or "bad". If the patient did not respond or answered "bad", then the health provider contacted them through the cell phone to understand the problem and determine how to help. I believe that through this weekly messaging, patients felt supported by their health providers in a way that instilled trust in the treatment process and in the medications they were taking. Of course this is hard to measure but is consistent with results from similar counseling and electronic interventions we have implemented and studied (and hope soon to share through publication). The irony, I think, is that in this instance technology, instead of being cold and impersonal, can help bring a caring, individual element to the provider-patient interaction that is often lost in busy, overflowing clinics.

Best,
Michael

Sarah Arnquist Replied at 8:57 AM, 18 Nov 2010

**Cross-posted from the adherence community**

Sarah Iribarren

Hello All,
Very interesting and informative discussion. I am a doctoral student and have written a proposal using FrontlineSMS and patient initiated text messaging to indicate medication administration or notify for any problems plus weekly educational messages where only self-administration of treatment of TB is offered. There are DOT programs at local health care centers but patients are either not referred or they choose to continue treatment at hospital based clinic where SAT is standard. Although there is growing literature regarding SMS and ART, I am not finding much for TB treatment. One study, Hoffman, 2010 piloted video DOT showing technical feasibility and receptivity. Video capable phones may still be less accessible but this seems to be a great option. I am wondering if anyone has any experience with something similar to what I am proposing or what your thoughts are regarding its potential efficacy or other considerations?
Thank you for your feedback
Sarah

--

Seth Kalichman

Hi
The flashing signal as a reminder is right in line with our use of wireless technology. We have been using existing tech, especially low tech phones, for our adherence work. The phones we use are given to us free by the provider (Sprint) when we pay for service plans. We do unannounced pill counts, voice contacts, text messaging, and interactive text response. Just like others, we do not always know when text message reminders are received. When patients/participants terminate the flashing signal, does the phone register the response? Collecting some indicator of message received, using the existing low tech phone or freeware would be of interest to me.

8:43 AM, 17 Nov 2010 |

--
From Rowena Luk:

Dear Jessica S.,

Thanks for sharing that project with us. For those in the community that aren't aware, ict4chw (www.groups.google.com/group/ict4chw) is a great forum, not just for those working with information communication technologies and community health workers, but for those generally interested in mobile phones and public health projects. They have many great case studies and lessons learned, which are freely available to browse in the forum's archives.

This project in particular is a nice contrast from the rest of our discussion, since it focuses on enabling technologies for healthcare providers and not just technologies targetted directly at patients. Both have an important role to play, but tools for providers fall into a different kind of problem domain since providers can usefully be supplied with standard phones, additional training, support, and a richer toolset.

Jessica H., to answer your question, both platforms have their roots in JavaRosa, an open-source data collection project to which Dimagi is a strong contributor. Both support email, web, and SMS alerts and reports. Both are built upon the standard XForms protocol for defining generic forms. In fact, I wouldn't be surprised if we found that we could seamlessly drop CommCare forms into OVC and have them work, and vice versa. While CommCare does have an SMS transport layer, it has generally fallen into disuse due to the significant operational cost savings of using GPRS (in many settings, less than a penny per payload). The tradeoff here is that SMS availability does not guarantee data/GPRS availability, although they are tightly correlated. Instead of Bluetooth-ing data to a computer, our 'send later' functionality is built right into the phone itself.

Still, none of these details sound like a dealbreaker for this project; the devil is in the training, management, support and getting the right feedback loops. In that vein, I'm very happy to hear how open Brian and their team are in sharing their experiences with the community, and would encourage this group to share similar stories of experiences with wireless technologies.

Cheers,

Rowena

1:22 PM, 17 Nov 2010

--

24
Rowena Luk

Dear Seth,

Welcome to the panel! And happy to have your input, as I know you've done a lot of work in this space. In particular, I'm sure the community would love to hear about your work with phone-based unnanounced pill counts (UPCs). We often think of mHealth and wireless technologies as very complicated technological systems, but UPCs have demonstrated some compelling metrics without any programming or software required. I also wonder if that general idea could be modified to address Sarah I.'s questions about administering remote DOTS. How much of the social motivation behind directly-observed therapy can be mimicked at a distance?

One question I have about the flashing approach, for both Seth and Jeff; in our work training users of text messaging systems across a variety of use cases (reminders, logistics, reporting, communications), we've found that providing feedback is a critical part of the training process. For example, if someone sends a text message saying "3 pills taken today" (in whatever format), they typically expect to receive a reply stating something like "Thank you. Your progress has been recorded.", or even better, "Thank you. Your adherence has improved 5% since last month." We've found that systems without such feedback demonstrate particular challenges with regards to long-term usage. What are your experiences in this with systems based on flashing, where the whole point is to call and hang up before you've received any acknowledgement?

Also, curious what you mean when you refer to 'voice contacts'?

Peace,
Rowena

1:56 PM, 17 Nov 2010 |

--

Seth Kalichman

Rowena
We use cell phones for assessments via human interview more than anything else. What I meant by voice contacts was mostly interviews and pill counts. Probably should have used a different term.

We have not used flashing lights for anything yet. But I am interested.

What we are doing rather successfully is collecting daily diary-type surveys using text messaging. Participants do a brief 6 item survey every day. They do get a prompt that says 'almost done' near the end. Otherwise, no feedback at all. Long term use is not a factor in the context of our studies, but I can see how it would be a huge factor in practical applications.

2:24 PM, 17 Nov 2010 |
--

From Rivet Amico

I have been following these posts with great interest! What a wonderful and diverse discussion. There are two main threads here- measurement for research purposes and monitoring for intervention purposes. I have a follow-up question for Seth and others using daily dairy type messages with SMS and also wanted to briefly follow-up with an earlier post from Jessica H.

DAILY SMS:

For daily SMS or voice-interview, I recently was trying to do a literature review that might provide some level of guidance on issues of sensitization with something like SMS or daily interview on the cell phone- for using this method in research. We know from other work (interactive voice response as well as MEMs cap studies) that there is a period of time starting with when the method or tool is introduced that behavior can change as a function of constant monitoring of it. But, often returns to baseline (pre monitoring) levels after some time (so you habituate to it)- for MEMs that appears to be about 40 days after introduction of it for a return pre-MEMs levels. My question is whether or not there is a similar period for SMS or daily call-in for sexual risk behavior or adherence that we should be concerned about when trying to get a "baseline" (pre-intervention levels) of some behavior when using this kind of method for assessment?

DAILY MONITORING AS PART OF INTERVENTIONS IN CLINICAL CARE?:

Jessica H had in one of her posts yesterday a note about how these kinds of technologies as an intervention, specifically, will need to be considered in terms of who would and who would not welcome it/benefit from it. In thinking specifically about using EDM and real-time or any kind of daily monitoring in clinical practice, I believe we need to be really careful about this being an approach that should not be considered as a standard thing all patients should do. We have plenty of examples where behavioral interventions become policy at a large scale or at a clinic based level- where you have intervention strategies that work well for some or even most that become a part of standard care. When that happens, patients often must accept and partake in it, and opting out is seldom a real consideration (think of pre-arv training, treatment buddies, ARV adherence groups, so on that have become part of the care package in many clinics -- good for many but not so good for people who don't want it or want something different and feel unable to "opt out"). I would hate to see real-time or over time monitoring fall into this category of things at some point down the road. More so than other tools and strategies, monitoring has more potential to have a lot of negative ripple effects-- as a clinic policy (all patients use X device) it could make people feel constantly watched (big brother watching), could push a divide between patients and providers, could promote concerns that monitored non-adherence would have negative consequences by the clinic or provider, or create the feeling that personal choice (including personal choice to NOT take care of yourself) is compromised.

BUT, it certainly will have appeal to many and for those individuals in care, the idea of real-time intervention is such an interesting and compelling one. The idea of offering support or problem solving as a dose window is expiring has a lot of promise. And we know from work by DeBruin and his group that reviewing MEMs data (patterns of adherence) with participants/patients can be an effective strategy for enhancing adherence. There is a lot of promise here for different kinds of intervention approaches (like phone based brief counseling, problem solving, or motivational interviewing) to be coupled with the monitoring so that counseling is delivered when there is a marked risk (if the EDM data is in fact reflecting them consecutively missing doses). There are so many possibilities. For patients who are willing and interested, these technologies offer a really innovative way to identify when someone may most be in need support.

Thanks for the really interesting discussion!

Rivet

K Rivet Amico, PhD
Research Scientist
Center for Health, Intervention and Prevention
University of Connecticut
810 360 8716
800 518 0243 (fax)

3:33 PM, 17 Nov 2010 |

--

Timothy Cook

Hi Jessica,

On Tue, 2010-11-16 at 20:52 -0500, GHDonline (Jessica Haberer, MD, MS)
wrote:
> We recently received funding to expand from our current sample of 92 participants to nearly 1,000 over the next fewl years.
> I anticipate that the largest challenge will be in data management, and we have already been preparing automated reports and data checks
> to help deal with the impending deluge of data. Allocation of human resources for real-time action will be another issue, which will
> hopefully be facilitated through good data management. Our goal is to develop and implement a streamlined system that can be replicated in other settings.

I am new this subject (but not health IT). Can you possibly give me brief overview of the data management challenges. Or maybe just a link to where I can begin to gain an understanding of them?

Thanks,
Tim

Jessica Haberer, MD, MS Replied at 10:42 AM, 18 Nov 2010

Hi Michael,

Thanks for your perspective. I think cell phones are a great way to expand our current concepts and models of patient care. The human resources are simply not available for one-on-one, face-to-face physician and patient encounters for every problem, especially in developing settings. Moreover, patients can¹t always get to clinical settings. As nicely shown in Richard¹s study, cell phones can be used to screen for problems, identify them in a relatively timely fashion, and triage valuable clinical resources. Texting also allow for asynchronous care, which isn¹t part of the traditional care model, but may make more sense for busy providers and patients. Legal and ethical issues certainly arise with any new models of patient care, but I think the benefits of providing care when and where it is needed are worth the effort of working through such issues.

Best,
Jessica

Jeff Rafter Replied at 12:04 PM, 18 Nov 2010

Hi Jessica, Yep Mike was the one presenting the poster at mHealth. We have thought a lot about incentives and would love to see more literature. There has been a lot of recent studies on motivation that seem to argue against positive/negative incentives. This is something we hope to find out about in our upcoming pilot. In general, interventions like Happy Pill can't do anything to ensure you take your medication, they simply make reporting that you did easier (whether truthful or not) and allows the provider to much more quickly determine the population that needs followup. As it stands (in Malawi), followup teams pursue patients when they are 30 days late for an appointment, which happen every 30 days. It is common that patients will be lost-to-followup if there has been no contact in two months.

Seth: for flashing the caller's phone has an indication of when they flashed in their call log. This is not generally used from what we can tell, but it is useful if you forgot whether or not you flashed. The person receiving the call doesn't pick up, but the get a "missed call" notification on their phone. When people flash us, we collect these and store them in the database.

Rowena: actually we always give feedback (in the form of an SMS) for our system here in the US and it is definitely an option. We could easily make this a "flash-back" if we were trying to reduce costs. When people sign up for the system (in the clinic/on the web) we actually encourage them to program the contacts on their phones so that when they receive a flash the contact name that appears (when ringing) is something along the lines of "Take your pills" or "Thanks, we got your flash". By working with several numbers you can communicate a lot of information.

Kindest Regards,
Jeff

Steven Wanyee Macharia Replied at 3:27 AM, 19 Nov 2010

Michael:

I agree with you that cell phone technology and by extension any technology deployed to enhance provision of health care basically bridges the gap that most patients especially suffering from chronic illness crave for; regular and consistent access to health care providers and support. As a patient, having that knowledge that there is a health professional available to answer your questions and clarify any issues when you need them or when you may have is key to getting better, its even much better, probably therapeutic when those health professionals pro-actively support you, e.g. through SMS alerts and reminders. I think that is the greatest value of Health Information Technology which includes mobile technology.

A/Prof. Terry HANNAN Moderator Replied at 3:53 AM, 19 Nov 2010

Response to Steven's comments:" As a patient, having that knowledge that there is a health professional available to answer your questions and clarify any issues when you need them or when you may have is key to getting better, its even much better, probably therapeutic when those health professionals pro-actively support you, e.g. through SMS alerts and reminders."

These words are very close to the core of the patient-clinician relationship. Through the use of a rudimentary "Summary Record Report" transmitted through email communication in regional Tasmania patients of mine can remain in real-time contact with me as a physician. Many of these patients reside beyond a 20Km radius of the main centre and access to care is often by ambulance or small aircraft (80-100Km) with no mechanisms for screening illness severity. Through the use of standardised applications (e.g. Windows and email) the patient retains a summary of their record, diabetics monitor and email their BGL results for comment and in some instances unnecessary admission to hospital is
avoided. [Stud Health Technol Inform. 2007;129(Pt 1):350-3. The use of existing low-cost technologies to enhance the medical record documentation using a summary patient record [SPR]. Bart S, Hannan T.]

Two example cases come to mind.
1. An 80+year old who lives 80Km away and sends her BGL readings.
2. A 50 year old female with a rare allergy syndrome (Hereditary Angioedema)and also resides 80Km away, has avoided unnecessary admissions (previously 16 in 15 months) for this disorder for more than 2 years. A significant event was when she was asked do you have a photograph of you in an attack? She said "you mean like this?", as she passed her mobile phone to me! This image is IN her record which she has on line and a printed version. In the record she has web links to resources on her rare condition which she can access at anytime.

I hope this adds value to the discussion.
Terry Hannan


Dr Terry J. Hannan MBBS;FRACP;FACHI;FACMI
Consultant Physician
Clinical Associate Professor School of Human Health Sciences,
University of Tasmania

Jessica Haberer, MD, MS Replied at 7:03 AM, 19 Nov 2010

That's amazing, Terry! Great work!

Jessica

Sent from my iPhone. Please excuse brevity and typos.

Sarah Arnquist Replied at 7:25 AM, 19 Nov 2010

**Cross post from adherence community**

Jessica Haberer, MD, MS

Hi Rivet,

Thanks for your post.

I always enjoy your perspectives, although I have to disagree with you somewhat on this one and would welcome further discussion among the community. I do agree that choice is an important feature of just about any program and opting out isn¹t always a real option. However, your concern about Big Brother has not borne out in our initial acceptability data. I know that our sample of ~100 isn¹t enough to base policy decisions on; however, not a single person has been worried about the monitoring aspects. Rather, many have specifically said that they like the idea of someone watching them. They really appreciate that someone is willing to spend the time and money to take care of them. When I¹ve brought up real-time monitoring at meetings and conferences in the US, the Big Brother question always comes up. It, however, has rarely come up in such gatherings in East Africa. Again, I would welcome input and perspectives from others in the community, especially across different geographic and cultural regions.

As for the potential of negative consequences, I completely agree that we need to be vigilant. The last thing I¹d want to see is people being denied care and treatment because they don¹t adhere well enough. The same scenario, however, could be imagined with detectable viral loads, which as you know often reflect poor adherence. Do providers deny care and treatment to patients who don¹t fully suppress or remain suppressed? I¹m sure it happens, but I¹d like to think it¹s not common practice. If real-time monitoring were ever to become the standard, guidelines should address this important issue.

My bottom line is that I think the benefits of real time monitoring outweigh the negatives, and we shouldn¹t be afraid of making it a standard. I think logistics will prevent adoption in many places, although the feasibility and potential for widespread use is increasing with time.

Best,
Jessica

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31
Jessica Haberer, MD, MS

Hi Tim,

Here are a couple of examples:

1. Separating the signal from the noise. On average, each participant generates 2 device event data points per day. With a small group of patients, you can simply look at the dot plots for gaps of any pre-determined length (48 hours in our case) and then trigger your investigation and/or intervention. With large numbers, however, this process requires automation. Our partner at Wisepill has therefore been generating daily reports of patients with >48 hour interruptions. That solution was relatively easy to develop and implement.

2. Tracking investigations or interventions and linking data. Once we identify a lapse in signal, we need to think through all the potential causes. Could it be technical (e.g. a battery failure, delayed signal transmission), intentional (e.g. the patient took out several doses at once to go on a trip), or behavioral/structural (e.g. the patient forgot or encountered a barrier)? We are collecting data on the technical causes through automated reports like I described above, which we then have to link to the interruption reports. The Wisepill data is managed using MySQL and most of these tracking reports are easy enough to generate (or at least so I¹m told... I¹m not a programmer); however, the more sophisticated the data, the more sophisticated the code. For research purposes, we want to track many other issues, such as early, late, and on-time device events, and how those relate to interruptions in the Wisepill signal. So we¹re exporting the MySQL data into an Access database and generating linked files. Again, the code is not rocket science, but it does require meticulous attention to all the potential errors in event definitions, identification of technical problems, etc. Additionally, the data collected on the ground for the intentional and behavioral/structural causes, as well as biologic tests (e.g. viral load), also needs to be linked to the interruptions, which we accomplish through data entry to the Access database. Some of this is automated through DataFax, but some requires manual entry. One easy data linkage is sending SMS based on the interruptions, which is a plug-and-play feature of the existing Wisepill system. However, tracking the response to the SMS requires an additional layer of data management.

3. Human resource management. This issue isn¹t technical, but deciding how to assign staff to conduct investigations/interventions based on often unpredictable, real-time data is a major challenge that requires quite a bit of trial and error in the ramp-up phase.

Please let me know if that¹s helpful and if you¹d like to talk further.

Regards,
Jessica

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32
Rivet Amico

Jessica

Thanks for the thoughtful reply and added insights! It would be interesting to learn more about aspects of uptake and preference for monitoring. I wonder if it helps people feel connected when they may otherwise feel quite isolated, but there are likely many aspects of using a monitoring device that could be a facilitator for adherence- and if alarm and other features could be added, the list keeps growing!

There are several projects that are planning to use WisePill in the near future (not for ARVs but other daily dose regimens) that will add to what is already in the field in terms of acceptability and feasibility of a daily monitoring-- for individuals in Thailand, Cape Town, and cities in the US. Combined with all the other projects considering WisePill or some other daily monitoring device, I do hope we will get to that reduced cost per unit in the near future. But, I completely agree that we are still a ways off from these kinds of devices being feasible for wide-scale use in standard care. This gives the community here time to get a better sense of how this might be used for effective intervention (delivery of in-time adherence support) and what promotes positive uptake. I am concerned about the potential for daily monitoring to feel particularly intrusive. But that is a non-issue if one uses the monitoring device because of choice to do so.

Again- thanks for all of the conversation and wonderful posts!

Rivet

Rowena Luk Replied at 8:49 AM, 19 Nov 2010

Dear Michael,

Your comments remind me of a paper I came across recently:

Using Electronic Drug Monitor Feedback to Improve Adherence to Antiretroviral Therapy Among HIV-Positive Patients in China. Sabin et al. AIDS Behav. 2010 Jun;14(3):580-9.

In it, the authors describe how feedback from EDM monitoring system was used as the basis to identify low adherers, who were subsequently scheduled for a face-to-face counselling session at their monthly clinic visit. Even after a single such session, the results show a remarkable, sustained improvement. What's interesting here is that the control population involved a similar intervention, only using patient self-report instead of the EDM device. This strikes me as a strong example where monitoring technologies demonstrate utility because they give the provider better data on which to act in their relationship with the patient. Technological systems alone have limited utility; it's only when we use these systems to strengthen direct interventions that we start to see behaviour change.

Peace,

Rowena

Rowena Luk Replied at 9:30 AM, 19 Nov 2010

To the discussion on the dangers of daily monitoring and the 'big brother' effect, users of mHealth systems need to have an option to 'opt-out' at any time and need to be educated about their freedom to do so. This is the responsibility for all researchers, implementers, and proponents of mHealth systems, and is behaviour mandated by institutional review boards, ethics committees, and even industrial consortia such as the Cellular Telecommunications Industry Association.

This raises the question: what new ethical considerations do such technologies introduce? At the recent mHealth summit in DC, Bill Gates gave the hilarious example of a phone which locked up and refused to allow phonecalls until its user did 5 push-ups (example of a health promotion technology). That example is clearly farcical, but there are many more immediate ones: for example, if someone is scheduled to receive daily reminder text messages, protecting their medical information even in the case where that phone is lost and someone else picks it up. This is a problem we've solved on our ARemind platform by using a notable keyword as the reminder, and making sure our messages do not explicitly indicate that the person has HIV/AIDS or is even necessarily taking pills. Also, we are currently iterating on a system whereby an automated voice (IVR) calls up patients instead of sending text messages (so that we can support low-literate communities), and honing this intervention in a way which allows us to gather confidential information without making the system so complicated as to be unusable.

What other stories does this community have, of ethical considerations and solutions in this space?

Rowena

Joaquin Blaya, PhD Moderator Replied at 10:20 AM, 19 Nov 2010

Rowena,
Your example of using a keyword that isn't associated with either the disease or taking medications is a great idea, I will take that under consideration in the project that we are doing here in Chile with diabetic patients.

Also, could you let me know a little bit more about the IVR system that you are developing. As I mentioned in a previous email, we are also developing an IVR system by connecting OpenMRS and ODK-Voice, and have been talking with MoTech about them taking this platform and expanding it. If this is something that could also benefit you, we should see how we could work together.

Warm regards,

Joaquin

___________________________________________________________________
Chief Technology Officer, eHealth Systems Chile
Research Fellow, Harvard Medical School/Partners In Health
Moderator, GHDOnline.org

Jessica Shull Replied at 11:23 AM, 19 Nov 2010

Dear all,
This discussion illustrates a rich body of knowledge not yet disseminated throughout the mHealth community. As a follow-up, I'd like to suggest posting your apps (if they are not already) on the HUB database:
http://www.healthunbound.org/technology/applications so that peer ratings and commentary can be seen and debated by a wider group of stakeholders.

Sincerely,
Jessica

Sarah Arnquist Replied at 5:21 PM, 19 Nov 2010

Hi everyone!

As we officially close the panel, I'd like to thank our excellent panelists, Jessica Haberer and Rowena Luk, for leading the discussion and sharing their valuable knowledge with us. Also, thank you to all who participated and read the discussions. This was our first time running a panel simultaneously in two communities. We need to perfect the process, but I think it’s worthwhile, considering the broad range of experience and perspectives represented.

The conversation should continue in many forums, both internal and external. Please start related discussion threads on GHDonline.org or via email by replying with a new subject line.

We will post a brief summary of this discussion shortly to succinctly capture all the nuggets of wisdom shared. Additionally, I’ll attach some of the open-source resources suggested throughout.

We’re looking forward to hosting more panels and welcome your ideas! Please email if you have specific panel ideas and would like to participate.

Thanks again,

Sarah

Om G Replied at 11:55 PM, 19 Nov 2010

Michael thanks for bringing up this point.

Many may see the technology but miss out on the purpose and use. I think it has something to do with Western isolationist social norms. Most of the world having deep and robust social connections see the function rather than the phone. Conveying an emotional message that makes the means transparent.

I think iconifying (using graphical forms) the process would make it more human as well as opening the interaction to non literate populations.

Best,

Om


om

Rowena Luk Replied at 9:33 AM, 22 Nov 2010

Thanks for organizing this Sarah!

To post a final response to Joaquin's request: our current system (ARemind II) is an integration of RapidSMS and Tropo, a platform built on top of Voxeo's infrastructure (much like ODK Voice in that sense). It's great to hear of your work extending the OpenMRS functionality, though, since I know they have a rich user community. For our current use case, however, I don't think we're looking for the overhead of a full-fledged medical record system, since we're still in rapid-iteration, requirements-definition mode. Plus, it's likely that our adherence platform will evolve into a service that integrates with a variety of existing medical record systems, instead of one that tries to address the formidable problem of complete records management itself. I think for right now we can watch these technologies develop in tandem, but I'll ping you if things starts to steer in your direction.

Peace,

Rowena

Joaquin Blaya, PhD Moderator Replied at 12:17 PM, 11 Jan 2011

Hi everyone,
Just wanted to let you know that a discussion brief summarizing the points of this discussion has been posted, as well as in PDF format. We encourage any further discussion on this.

Do you think any of these technologies would be useful in your context? Have you looked or tried any since this discussion? or other other systems that were not placed in this discussion brief?

Erin Meier Replied at 3:07 AM, 28 Oct 2012

We use SMS messaging with our HIV clinic. Our nurses are able to contact patients and the patients the nurses, which allows simple questions to be asked easily without the pt having to travel to get to our clinic. It also allows us to follow up on pts we haven't seen for a while.

Patrick Mahlangu Replied at 5:59 AM, 28 Oct 2012

Thanx Erin , ehealth intervention at its best.

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