Taking Action

HIV Data Collection: 3 Tips to Modernize Securely

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Margaret Nelson Avatar
Margaret Nelson
on
Aug 5, 2021

Dear Diary,

I have been struggling with an eating disorder for the past few years. I am afraid to eat and afraid I will gain weight. The fear is unjustified as I was never overweight. I have weighed the same since I was 12 years old, and I am currently nearing my 25th birthday. Yet, when I see my reflection, I see somebody who is much larger than reality.

I told my therapist that I thought I was fat. She said it was 'body dysmorphia'.
She explained this as a mental health condition where a person is apprehensive about their appearance and suggested I visit a nutritionist. She also told me that this condition was associated with other anxiety disorders and eating disorders. I did not understand what she was saying as I was in denial; I had a problem, to begin with. I wanted a solution without having to address my issues.

Upon visiting my nutritionist, he conducted an in-body scan and told me my body weight was dangerously low.

I disagreed with him.

I felt he was speaking about a different person than the person I saw in the mirror. I felt like the elephant in the room- both literally and figuratively. He then made the simple but revolutionary suggestion to keep a food diary to track what I was eating.

This was a clever way for my nutritionist and me to be on the same page. By recording all my meals, drinks, and snacks, I was able to see what I was eating versus what I was supposed to be eating. Keeping a meal diary was a powerful and non-invasive way for my nutritionist to walk in my shoes for a specific time and understand my eating (and thinking) habits.

No other methodology would have allowed my nutritionist to capture so much contextual and behavioural information on my eating patterns other than a daily detailed food diary.
However, by using a paper and pen, I often forgot (or intentionally did not enter my food entries) as I felt guilty reading what I had eaten or that I had eaten at all.

I also did not have the visual flexibility to express myself through using photos, videos, voice recordings, and screen recordings. The usage of multiple media sources would have allowed my nutritionist to observe my behaviour in real-time and gain a holistic view of my physical and emotional needs.

I confessed to my therapist my deliberate dishonesty in completing the physical food diary and why I had been reluctant to participate in the exercise. My therapist then suggested to my nutritionist and me to transition to a mobile diary study.

Whilst I used a physical diary (paper and pen), a mobile diary study app would have helped my nutritionist and me reach a common ground (and to be on the same page) sooner rather than later.

As a millennial, I wanted to feel like journaling was as easy as Tweeting or posting a picture on Instagram. But at the same time, I wanted to know that the information I  provided in a digital diary would be as safe and private as it would have been as my handwritten diary locked in my bedroom cabinet.

Further, a digital food diary study platform with push notifications would have served as a constant reminder to log in my food entries as I constantly check my phone. It would have also made the task of writing a food diary less momentous by transforming my journaling into micro-journaling by allowing me to enter one bite at a time rather than the whole day's worth of meals at once.

Mainly, the digital food diary could help collect the evidence that I was not the elephant in the room, but rather that the elephant in the room was my denied eating disorder.

Sincerely,
The elephant in the room

"Why are you so interested in HIV?"

This was the first question that I, a college intern, received from many of my co-workers at my city's public health AIDS department.

As a young, white, straight-passing, cis-gendered female, my colleagues rightfully wondered what personal connection I had that attracted me to work in the field of HIV/AIDS, which primarily affects men that have sex with men (MSM), transgender people, people who inject drugs, and Black and LatinX individuals. 

My response? We have all the medicine and technology necessary to end the AIDS epidemic, yet we have failed to do so given the barriers to providing care to the marginalized populations most at-risk for HIV.


Lessons from COVID-19 that could improve policies in HIV/AIDS

The COVID-19 pandemic demonstrated that policymakers can make considerable progress towards ending infectious disease epidemics with significant political will and resource mobilization towards a digital, integrated health system response. 

As the world continues to combat COVID-19, other epidemics, including AIDS, that predated the COVID-19 pandemic persist and intensify. Despite COVID-19 response mechanisms extracting resources from other public health issues in the short term, the pandemic does contain some silver linings for the long-term future of public health. 

COVID-19 may be just what the field of public health needed to receive global attention, resource mobilization, and modernization. 

The pandemic brought communicable disease data collection into the Twenty-First Century. 


The unequal burden of COVID-19 on vulnerable populations highlights systemic inequities in health systems, education, housing, and environmental exposures. 

The social and political mobilization around the pandemic increased geopolitical focus on public health, directing money and resources into developing new public health interventions and reforms. 

Variable COVID-19 health outcomes across nations and municipalities demonstrate the value of real-time, comprehensive data collection in curbing the spread of infectious diseases, identifying at-risk populations, and designing effective interventions. 


Data is paramount to ending the AIDS epidemic as well. 

HIV persists as a pressing public health issue in the U.S. and worldwide, particularly among people of colour, transgender people, people who inject drugs, and men who have sex with men (MSM).

Globally, 38 million people are living with HIV, and only 59% of those living with HIV have undetectable levels of the virus (achieved through consistent antiretroviral therapy). 

UNAIDS set an ambitious goal, known as 90-90-90, to end the global AIDS epidemic, which has killed over 39 million people, by 2030. 

The three targets of the 90-90-90 goal are:

  • By 2020, 90% of all people living with HIV will know their HIV status.
  • By 2020, 90% of all people with diagnosed HIV infection will receive sustained antiretroviral therapy.
  • By 2020, 90% of all people receiving antiretroviral therapy will have viral suppression.

These targets are also an effective tool in measuring progress towards ending the AIDS epidemic, but their utility is dependent on data accuracy and availability. 


Challenges to HIV/AIDS Data Collection

Compared to other communicable diseases, HIV/AIDs surveillance faces several unique barriers. 

In the United States (U.S.), health care providers are legally required to report cases of HIV to public health authorities. In many health care settings, reporting systems rely on providers to manually input data, resulting in incomplete, slow, error-filled information. 

Systemic barriers to accessing health care — affordability, transportation, citizenship status, and health literacy — also hinder accurate HIV data collection.

HIV/AIDS key populations include sex workers, people who inject drugs, prisoners, people of colour, transgender people, and MSM. 

Key populations (KP), or those most at-risk for HIV transmission, face many of these barriers to health care, as well as the additional challenges of stigma, anti-LGBTQA+ laws, violence, and discrimination.

In 2017, 47% of new HIV cases globally were among KP and their sexual partners. Barriers to health care not only affect KP from receiving screening and care, but also hinder accurate data collection for HIV surveillance, resulting in ineffective interventions. 

Despite the disproportionately high rates of HIV among KP, data are scarce on the continuum of HIV prevention and care. 

Although federal and state laws restrict the share of personally identifiable HIV data across healthcare providers and research entities in the U.S., privacy remains a concern for many individuals at the highest risk for HIV.

Mistrust of medical institutions stems from historical and ongoing discrimination in the medical system of people of colour and gender minority people. Mistrust acts as an additional barrier to HIV testing and treatment, and thus to HIV data collection. 

3 Tips to Modernize and Improve Secure HIV Data Collection

1. Automatic Electronic Case Reporting (eCR)

HIV data collection must undergo digitalization and automation.

The current system for mandatory reporting of notifiable diseases, including HIV, in the U.S. faces considerable barriers such as providers' lack of awareness of reporting requirements and procedures, human error, lack of motivation, and poor system processes. 

HIV data collection mainly relies on providers to manually report data, resulting in incomplete, inaccurate, and slow data collection processes.

Studies show that provider job fatigue and inaccessibility to data systems further hinder HIV data collection. A proposed solution to these challenges is automated electronic case reporting (eCR).

Electronic case reporting increases the accuracy and completeness of reporting to public health authorities. 

The Centers For Disease Control (CDC) lauds eCR as a highly effective technique for improving the COVID-19 outbreak response with real-time data flow.

Electronic Case Reporting (eCR) is the automated generation and communication of case reports from an Electronic Data Capture (EDC) or electronic health record (EHR) to public health agencies.

The key to an effective automated case reporting system is to integrate the tools used daily by health workers with the analytic solutions used for reporting and statistics. With the advent of API integrations, data collection platforms such as Teamscope can be easily integrated with other EHRs or data analytics solutions.

In addition to providing seamless and secure information to public health agencies to review and act on, eCR also allows health agencies to provide information back to healthcare professionals and create community scorecards. 

The CDC endorses the safety and security of the COVID-19 eCR system, providing hope that such a system could also be used to maintain the privacy of HIV data. 

Utilizing eCR for HIV data collection may be especially useful for ensuring consistency in care by providing up-to-date longitudinal data. eCR offers the benefit of more seamlessly integrating data collection and surveillance into the health system by reducing the burden on providers to spend less time and effort on data collection when interacting with patients.  


2. Integrate mHealth into existing health systems

In addition to eCR, utilization of mobile devices may also aid in integrating data collection into existing health system processes. 

mHealth refers to the practice of medicine and public health supported by mobile technologies. mHealth has proven effective for reaching vulnerable populations, who often rely on community health centres for affordable and accessible care. 

Especially in lower- and middle-income countries (LMICs), mobile phones have demonstrated success at improving routine community health workflows, such as data collection, reporting, monitoring, and evaluation. During COVID-19, providers worldwide used mHealth to connect citizens to the health system.

Despite this success, implementation of mHealth in LMICs faces challenges concerning lack of provider training on new mHealth interventions, weak tech support, high investment and maintenance costs, and problems with internet connectivity. 

Increased financing and resources could significantly help solve all of these issues, as demonstrated by the success of resource mobilization for COVID-19. Thus, mHealth solutions must be implemented in tandem with increased investment in public health.

mHealth may significantly assist in data collection for patients who do not usually interact with the traditional health care system. 

Equipping community health workers in harder-to-reach areas with mobile devices may disrupt many barriers that KP's face in accessing health care. Especially when community health workers are trusted members of the community, mHealth promises to fill missing gaps in HIV KP data collection. 


3. Digital contact tracing 

In addition to mHealth simplifying and accelerating data collection for health workers, personal mobile devices can aid in data collection and accuracy. 

During the COVID-19 pandemic, many jurisdictions worldwide used digital contact tracing to track the movement and location of their citizens in order to track the spread of disease. Mobile phone GPS data provided public health authorities with real-time data on individual transmissions and community-wide data on case rates and infection rates. 

With real-time data, authorities initiated real-time interventions, notifying individuals of possible contact with COVID-19 and mobilizing resources to areas with the highest disease rates. 

Digital contract tracing via personal mobile devices also allowed authorities to collect location-specific data on all of their jurisdictions for minimal cost, limiting the need to rely on external validity. 

Digital contact tracing via personal mobile devices allows public health authorities to track and react to COVID-19 outbreaks quickly and efficiently.

Public health authorities could use digital contact tracing to accelerate HIV contact tracing and to notify individuals who may have been exposed to HIV to get tested before they engage in any risky activities. 

While COVID-19 spreads via aerosols and contaminated surfaces, HIV transmission occurs through the exchange of blood, semen, or rectal or vaginal fluids. Because of the methods of HIV transmission, HIV contact tracing cannot simply rely on the proximity of individuals to assume possible transmission. 

To protect the status of individuals living with HIV, only aggregate or population-level data should be shared with members of the public. In addition, HIV digital contact tracing may need to be delivered as an opt-in program, as many COVID-19 tracking programs were. 

Opt-in programs allow individuals who consider themselves at-risk of infection to decide to be tracked and receive notifications of possible contact with an infected individual. The use of mobile phone data on location and HIV status must consider the balance of potential infringements on privacy with public health benefits.

In addition, digital contact tracing relies on widespread ownership of mobile devices among the affected population. Although access to technological solutions is not uniform, a phenomenon known as the digital divide, there is widespread ownership of mobile phones in LMIC compared with other types of technology.


Conclusion

The global response to the COVID-19 pandemic demonstrates that significant progress in curbing epidemics can be achieved by adopting digital data collection practices and political mobilization of resources. 

COVID-19 proved that collecting and reporting daily case rate statistics of infectious diseases is possible.

The global public became amateur public health analysts: learning to read line graphs, identify waves of infection, and use powerful data visualization to save lives. 

This increasing concern for public health and health equity gives me hope for ending the AIDS epidemics and other enduring public health issues. 

The field of public health must capitalize on its moment in the geopolitical spotlight to modernize responses to other communicable diseases and expedite the process of ending pre-existing epidemics.

To reach the United Nations' goal to end the AIDS epidemic by 2030, improvements to data collection accuracy and completion, specifically for populations most at-risk for HIV, are necessary. 

Several digital solutions utilized to collect data on COVID-19 can be applied to HIV surveillance and integrated into existing health systems. These proposed solutions include automatic electronic case reporting, mobile devices (mHealth) in community health care settings, and digital contact tracing. 

In order to reach the end of the AIDS epidemic, which emerged in the early twentieth century, policymakers must base solutions in the digital age of 2021. Governments worldwide should continue to fund global health and health system building even after the COVID-19 pandemic subsides. 

If appropriately used in the 21st century, data could save us from lots of failed interventions and enable us to provide evidence-based solutions towards tackling malaria globally. This is also part of what makes the ALMA scorecard generated by the African Leaders Malaria Alliance an essential tool for tracking malaria intervention globally.

If we are able to know the financial resources deployed to fight malaria in an endemic country and equate it to the coverage and impact, it would be easier to strengthen accountability for malaria control and also track progress in malaria elimination across the continent of Africa and beyond.

Odinaka Kingsley Obeta

West African Lead, ALMA Youth Advisory Council/Zero Malaria Champion

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Dear Digital Diary,

I realized that there is an unquestionable comfort in being misunderstood. For to be understood, one must peel off all the emotional layers and be exposed.

This requires both vulnerability and strength. I guess by using a physical diary (a paper and a pen), I never felt like what I was saying was analyzed or judged. But I also never thought I was understood.

Paper does not talk back.Using a daily digital diary has required emotional strength. It has required the need to trust and the need to provide information to be helped and understood.

Using a daily diary has needed less time and effort than a physical diary as I am prompted to interact through mobile notifications. I also no longer relay information from memory, but rather the medical or personal insights I enter are real-time behaviours and experiences.

The interaction is more organic. I also must confess this technology has allowed me to see patterns in my behaviour that I would have otherwise never noticed. I trust that the data I enter is safe as it is password protected. I also trust that I am safe because my doctor and nutritionist can view my records in real-time.

Also, with the data entered being more objective and diverse through pictures and voice recordings, my treatment plan has been better suited to my needs.

Sincerely,
No more elephants in this room

Margaret Nelson Avatar

Margaret Nelson

Margaret Nelson is a public health professional and a Teach For America Corps Member. She graduated from George Washington University with a B.S. in Public Health and a B.S. in Economics. She has advocacy, policy, and research experience in global health, environmental health, women’s health, and health systems strengthening. Margaret has worked for the Philadelphia Department of Health AIDS Activities Coordinating Office and the Friends of the Global Fight to End AIDS, Tuberculosis, and Malaria. 


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