Data Collection

Home-Based Care: The Top 3 Challenges and Solutions

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Rawan Taha's profile picture
Rawan Taha
on
Aug 27, 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

I rode an Uber a few days ago, and the car broke down on a major highway. The trip went strangely off course as the driver tried to pull over to a shoulder to examine the vehicle.

As soon as I started to panic, I received a pop-up on my phone to check if I was involved in a car crash and safe. It seemed that the app was reading my mind. The moment I started to feel vulnerable and concerned for my safety, the app utilized GPS data and sensors to detect my potential lack of security. Through this data, I was offered timely resources on how I could seek help.

What could have potentially been a scary and uncomfortable experience was transformed into a pleasurable experience through reassurance coupled with the provision of effective and efficient solutions. Such a surveillance service does not replace the importance of the police or an ambulance if needed; however, the technology reduces the workload on often overly burdened emergency services by preventing an emergency.

While my ride ended safely, I reflected on how similar technology could be leveraged in the healthcare industry to detect when a patient would be approaching an emergency and provide them with quick options to help them prevent or address this emergency.

I mainly thought about how big data could be used for patients who are not within hospital settings but still need to feel like while at home, there is a reliable technology or a reliable algorithm that provides quality analytics in monitoring their health needs and potentially detecting danger.

What is Home Health Care?

Home health care services are health care services provided for patients within their own homes to manage an injury or a disease. This type of care is not intended to replace the critical role of hospital care or take over doctors' roles performing examinations or surgeries. Instead, home health care aims to empower patients to take control of monitoring their illnesses and enhancing their health outcomes.

By outsourcing medical care to patients, a mutualistic benefit arises for hospitals by decreasing the load on frequently overly burdened health care systems and decreasing the costs of hospital care and simultaneously empowering patients to be their own health care providers.

Who is Home Care Suitable for?

Home care settings are indicated for patients that need care but may have difficulty getting out of the house. These patients may include:

  • Those healing from serious injuries.
  • Elderly patients.
  • Patients avoiding complications after childbirth.

Other indications for home care settings are patients that may not have difficulty getting out of the house but still need medical care while preventing frequent hospitalizations or emergency room services. This category may include:

  • Patients receiving complex medical treatments such as wound care or IV medications.
  • Patients learning how to manage a chronic disease such as diabetes or hypertension successfully.
  • Patients requiring diet management (for both weight loss and weight gain).
  • Patients monitoring the intake of prescribed drugs, ensuring no doses are missed.
  • Patients needing to regularly record their vital signs such as breathing rate, temperature, heart rate and blood pressure.
  • Patients with mild COVID-19 needing supportive treatment.

Challenges and Solutions related to Home Care

1.Patient choice

While home care can reduce costs, decrease emergency department visits, and taper down readmissions, the main hindrance to the broader adoption of this care model is the lack of patient acceptance. Older persons who frequently need home care to remedy acute or chronic injuries or illnesses may prefer the traditional hospital care setting.

The reasons for older persons' preference to seek hospital care rather than home care can vary from social causes, emotional causes, and the inclination to stick to what is familiar, which is going to the hospital upon feeling ill.

These personal choices are valid. They should be honoured and respected by medical providers rather than disregarded or neglected.

A desire to seek in-person care rather than home care may reflect loneliness and the need for social connections and interactions which could be provided in a hospital setting. A desire to leave the house may be a sign of negligence from caretakers or elderly abuse.

A physician should prioritize such desires of a patient unwilling to partake in-home care as recommending this modality for a reluctant patient might yield adverse psychological and physiological health outcomes.

A key to understanding a patients' needs would be for a physician to elicit information about treatment preferences from the recipient of care rather than the provider of care, such as a family caregiver.  

Giving patients better choices with shared decisions

Although a home-care regimen might be indicated clinically, it may still be the wrong choice for a patient's profile. The solution is to treat a patient's preference for home care or hospital care in a fluid manner.

Strong relationships should be formed between home-based care program providers and hospital care providers.  Such relationships would allow for the fluidity of transitioning between the two health care systems and accommodating the changes in patients' choices. Additionally, stronger connections between these two essential (and not mutually exclusive services) may facilitate handoffs between these two care settings.


2. Patient Safety

This challenge in-home care settings is related to:

  • Psychological safety from potential abuse.
  • Physical security through the presence of adequate infrastructure.
  • Medical safety such as infection control and risk of not having a continuous health monitoring.
  • Communication safety through patients and family caregivers having sufficient information and training.

Supporting patients in home settings to sustain life, monitor, and manage acute care needs requires infrastructure. Safety must be considered in each patient interaction. Lack of security should exclude a patient from receiving home care regardless of meeting other inclusion criteria. Considerations should be given to managing patient autonomy with potential risks.

Using data management software to improve patient safety

To ensure a patient is as safe as home as they would be in a hospital setting, home-care settings should integrate safety considerations in a care plan. Communication should be clear on the roles and responsibilities for the patients, their caregivers, and the home-based care professionals.

To further reduce safety concerns around home care for frail and vulnerable patients who are often the recipients of this care, holistic measures should be taken by engaging all involved parties to deliver safe, cost-effective, and patient-centred care at home.

A comprehensive safety solution would be for a hospital to outsource the logistical issues of home-care to a data management software such as Teamscope or Alora.

Data collection software simplify data entry, monitoring and reporting of healthcare services while being safe by complying with data privacy requirements.

Using software for home care includes practical features for clinicians, such as entering and maintaining information on patient medications, automatically checking for drug interactions or flagging any drug allergies. Also, patients and their caregivers can be educated on their progress and treatment plans using visual logs and medication schedules.

Using digital software for home care, a clinician can further help specify the scheduled time for medications and provide a patient with notifications on approaching or delayed drug administration.
Such a feature enhances medication safety by reminding a possibly elderly and forgetful patient on their drugs or reminding a patient taking multiple medications to stay on track with their pharmaceutical plan.


3. Clinician Training and Safety

A gap exists in the health care market for more trained clinicians on home health care. Similarly, a gap exists for home health software to integrate features to help train clinicians on technical features to stay compliant with medical rules and regulations while successfully providing home health care.

Medical schools and residency programs should prepare for the transition of mainstreaming home care for many patients that fit the inclusion criteria of this care system.

The integration of home health care programmes in medical students' training and education will help prepare the next generation of health care providers for this inevitable shift.

Home health software can also utilize the clinician training gap as a business development opportunity to develop training modules and features to help clinicians best thrive upon providing health care.

Solutions to clinical training and safety

By home care services gaining traction through clinicians receiving more training in academia and through home health care digital platforms, the need for hospitals may be reduced.

Thus, countermeasures should be provided to address the profits lost from hospitals. These measures should also incentivize clinicians to provide home health care services and follow-ups.

Adjusting the landscape for home-based care to thrive requires a multidimensional revamp of the traditional health care systems where fees are required for every service, and there is less focus on patient-centred care and value-based medical provisions.

Medical providers need to be incentivized for offering solutions for the best interest of the patient. Still, multiple involved stakeholders such as insurance companies and policymakers would need to be incentivized too.
For the success and growth of home health care services, the vision of all service providers and beneficiaries must be aligned.

This alignment will yield a health care system for all the people and by all the people, thereby improving home health care services and improving all health care services.


Conclusion

We live in a time when disruptive and innovative health care systems are needed more than ever. The COVID-19 pandemic has served as a powerful example of how front-line clinical care is often done at home, from family members serving as caregivers to many using home testing kits for screening to others quarantining and carefully monitoring their symptoms.

The pandemic has encouraged many patients to be their own primary caretakers, thereby reducing the burden on overwhelmed health care systems and reducing costs for patients whilst reducing the risk of transmission between patients. Home care during the pandemic has demonstrated its potential to improve outcomes for many patients.

Furthermore, the pandemic has changed how success is defined in healthcare, where hospitals reward doctors for the number of patients seen and procedures performed. Successful health care is rather now regarded as a successful health system.

Home health care has also been redefined from care only offered to frail, elderly, or vulnerable patients to health care provided for any patient at home regardless of their capacity. The presence of home care systems can be mainstreamed through mobile health (mhealth) solutions that provide tools for patient assessment, evaluation, plan of care and treatment notes.

Through mhealth, healthcare can be managed by medical providers outside of the confines of a hospital. Documents could be completed online or offline then transmitted to a cloud upon the availability of the internet. Home care apps could also improve a clinicians' assessment of patients through using powerful data analytics to identify trends and responses to treatment.

The result of home care services enabled through mobile software is an offer that no patient and no healthcare system can refuse: maximum value for money, improved patient care, decreased burden on hospitals, and increased patient autonomy.

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

Rawan Taha's profile picture

Rawan Taha

Rawan is a PRINCE2-certified project manager and a Public Health professional with 3 years of experience managing development projects. She recently served as a Programme Analyst with UNDP in Zambia providing project support across topics such as Inclusive Cities, Climate Action, and Economic Growth. She was part of the inaugural cohort of a 16-month fellowship titled the African Young Women Leaders. Rawan aspires to rise as a development expert with the United Nations.

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