Ethics in digital health space
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This article has been written by Sharanya Ghosh, from Symbiosis Law School, NOIDA and explores the Digital Healthcare scenario to understand its ethicality.

Introduction

The mention of COVID-19 immediately brings to mind the words isolation and social distancing. However, despite the imposition of a lockdown and the near shutdown of the world at large, the digital world has continued to grow as it connects more and more people. Digital Healthcare is one such industry that has been growing in providing healthcare services over distances. But is digital health space ethical? Or does it put the privacy of the patients at risk? This article aims to explore the concept of Digital Healthcare, the risks associated and whether it is ethical or not.

Electronic and ethical healthcare

Digital Healthcare, as the name suggests, involves the distant treatment of patients using digital platforms for communication. This type of delivery of healthcare services is also known as telemedicine. It helps in direct interaction with the patient and ensures that the patient has access to healthcare even from remote areas. In recent times, Electronic Health Records have been used in order to retain and store the data collected from these communications.

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Electronic Health Records are used to keep a record of the medical details of a person in a digital format. These include the history, treatment, details of examinations and so on. It is essentially like a file of one’s health record, recorded in a digital form. The reason why Electronic Health Records are becoming popular methods of storing data is that they have several advantages. 

The questions relating to ethics arise in this situation when it comes to the storage and transmission of the patient’s personal health records. Who can access this information, how does one ensure that this information is handled with care, what are the repercussions in case the data is leaked, are just some of the questions that may come to mind. Patient information confidentiality has always been given importance in the field of medicine and it is expected to remain so in the future. 

Thus, finding solutions to the issues at hand becomes important in a world that has already begun adopting digital healthcare services as a new platform for providing services.

Digital healthcare in India

India is well-known for its quality healthcare services at lower costs and there have been several developments in improving the healthcare structures. Moreover, it has been declared in Future Health Index 2019 that 76% of Indian health professionals have already adopted digital health records in their practice. The usage of AI in the healthcare industry is as high as 46%. It is clear that India is on the path of becoming a global leader of digital and electronic healthcare services. There is much that has been done by the Centre to achieve these goals.

The Ministry of Health and Family Welfare set up a committee based on whose recommendations the Government published definitive guidelines that set the Electronic Health Records standards in India in April 2013. 

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Regulation and schemes

The Ministry of Health and Family Welfare is the supreme regulatory authority of Digital Health Services. The regulation at the state level is done by the respective department of health and family welfare of the State Government while the regulation at the regional or district levels is carried out by the State Directorate of Health Services. By this, a connection is formed between the healthcare facilities regulators at the regional and state levels. There are several schemes that are provided by the Centre and the State in order to fund the healthcare schemes.

The schemes related to Digital Healthcare that have been implemented by the Ministry of Health and Family Welfare are as follows:

Integrated Health Information Programme

This system was set up with the view of creating Electronic Health Records at a pan-India level for all citizens. Some of the benefits include lower health-related costs, improvement of public health reporting and monitoring and increase in efficiency by eliminating unnecessary paperwork.

Electronic Vaccine Intelligence Network

This network works on a smartphone application and helps in tracking the stocks of vaccines on a real-time basis and also provides information on the storage temperatures of the vaccines. It is an innovation that aims to support the Universal Immunization Programme of the Government of India that provides nearly 300 million vaccinations per year.

Online Registration System

This system uses a person’s Aadhaar information in the registration process and links patients to hospitals online. After choosing the required hospital and the department, an SMS is sent to the registered mobile number with appointment details. This platform allows hospitals to provide online appointments and also store detailed reports of their patients.

Central Government Health Scheme

This scheme is specifically for employees and pensioners of the Central Government. It provides several healthcare facilities to the patients.

These are just some of the major schemes that have been implemented by the Ministry of Health and Family Welfare. National Health Portal, e-Hospital, National Identification Number among others are also provided by the Centre.

Telemedicine Practice Guidelines, 2020

On March 25, 2020, the Ministry of Health and Family Welfare issued the Telemedicine Practice Guidelines. These guidelines enable Registered Medical Practitioners to provide healthcare using telemedicine.

Telemedicine means providing healthcare services through a digital medium especially in cases where distance may create an issue in accessing such facilities. The facilities include diagnosis, treatment and prevention of diseases and are to be provided through communications via digital platforms.

Some of the major aspects the guidelines cover are as follows:

Identification

The guidelines state that the practice of providing such facilities shall not be anonymous and that both the Registered Medical Practitioner as well as the patient need to put forth their details. The practitioner is required to confirm the identity of the person based on any relevant details furnished by them at the time of registration. The practitioner is also required to inform the patient of their own name and qualifications or post and attach their registration numbers on any communication that takes place between them. 

Consent 

Since the treatment is being carried out through a digital platform, it is important to ensure that the patient has consented to such treatment. This consent may be implied or expressed but it is important to be recorded in some form and shall be added to the patient’s records.

Prescriptions

The guidelines state that the prescription may only be granted to the patient if the Registered Medical Practitioner has fully gathered all the information about the medical condition. It is the duty of the practitioner to ensure that the medication being prescribed shall be in the best interests of the patient.

Ethical aspect

Medical ethics, entwined with legal norms of confidentiality and privacy ensure that a patient’s records and details remain protected. This is done by following the rules laid down by the: 

  1. Indian Medical Council Act, 1956
  2. Indian Medical Council (Professional Conduct, Etiquette and Ethics) Regulations of 2002

Moreover, the provisions of the Information Technology Act, 2000 are also applicable along with any other privacy laws. 

Thus, patients remain protected and their information is not misused. This is done with the view to ensuring that the professional boundaries of practitioners are not crossed and also to build trust within patients on the system of Digital Healthcare that is becoming an important step towards improved services in the future.

The advent of the COVID-19 lockdown and need for social distancing has further heightened the need for such digital interaction between healthcare professionals and the patients. Through these platforms, it will become easier not only to interact with patients and Registered Medical Practitioners but also in maintaining the healthcare records of the patients. Furthermore, this will help in creating a system where healthcare facilities are easily accessible and of lower cost.

Risks

Although Digital Healthcare services have been adopted for storing data by hospitals and the Government has further encouraged the industry, it does not come without risks. Some of the risks, especially those related to ethics are mentioned below:

Privacy and confidentiality

Privacy and confidentiality come into the picture when we see that the health records of a person are their property alone. This means that the data of the patient should be handled with care by the hospital and the practitioner who has access to it. The data regarding a patient’s records can only be released if requested by the patient or required by law. In certain cases, the decision lies in the hands of the legal guardian of the person. Now, the privacy of the patient may be protected by encrypting the data and ensuring that security is set up to protect it, such as using a password or applying some sort of system where only select persons have access to the data. It becomes important to set a hierarchy within the system and ensure that the data remains protected. It is also important to ensure that the persons working on the behalf of the service providers are aware of the liability and punishment in case they are found to leak such information.

Security

Health information is always confidential and is private information for the patient. In the case of Digital Health, even if the hospitals and the communication platforms try to ensure that the data belonging to the records of the patients remain protected, security breaches can never be overlooked. They threaten a person’s privacy and may even leak the information to others. Another issue could be that mobiles are easy to steal or misplace and if a person interacts with their practitioner through an application on their mobile, stealing the data may be quite easy. These security breaches can definitely be countered but it is important to ensure that the patient’s information remains protected and they feel safe and are able to put their trust in these systems. If the patients lose their trust in the system of digital healthcare in its initial stages, it may greatly hinder the growth of this industry in the long run. 

Delay in implementation

Introducing such a system to the population of any country, much less one that is the second most populated in the world, is not an easy task. This is because it involves the setting up of systems that can collect and store the data of millions of people. Since the aim is to ensure that each person has access to digital healthcare, it also means ensuring that each person’s records and data are collected. This is quite difficult, especially since there are still areas in India which have not been digitised and remain remote from the digital world. Here, implementation could take too much time and the delay will create issues for the patients. 

Data inaccuracies

It is not always true that the data collected or saved may be fully accurate. This particular problem may arise in situations where some data gets deleted or is incorrectly provided by the person who is filling the required form or fields. There may even be times where data while being transferred may get harmed, such as when a person is copy-pasting the data and so on. These practices need to be curbed and strict rules have to be set in order to ensure that no important data is misplaced or forgotten. This may otherwise lead to incorrect diagnoses or prescriptions which may cause unintentional harm to the patient.

Linking with Aadhaar

The Aadhaar system has been adopted across industries in India. It is often said that linking such sensitive details with one’s Aadhaar may not be advisable. This may even discourage people from using such platforms.

Trust factor

People often do not trust digital platforms. Even today, there are several people who prefer going to purchase groceries from the market instead of ordering them on some online shopping platform. The reason behind this is the quality and the interpersonal involvement of the service is not felt on a digital platform. Healthcare is an extremely sensitive issue for patients and it is obvious that people will be cautious and may not feel comfortable adopting these methods of consultation. There have been cases in India as mentioned in a WHO article where people have faced issues with continuous treatment due to the constant pressure of linking their Aadhaar to the data collected. Some persons who suffer from AIDS or are HIV-positive, due to fear of data leaks, decided to drop out of therapy. This lack of trust may greatly affect the industry and may be detrimental to providing proper healthcare facilities to patients.  

Inadequate funding

Although funding is generated, the public healthcare sector in India suffers from a lack thereof. This is not only because fewer funds are generated but also because the available funds are not put to use efficiently. The requirement of investment in a digital healthcare scenario will be quite heavy on the funds of the healthcare sector. It is important to ensure that the funds are both sufficient and efficiently used in this industry if it is to be successful.

Benefits 

There are several benefits in accepting digital healthcare as a method of providing healthcare services to the public at large. Some of these are highlighted as follows:

Time

Digital anything saves time. Of course, this is not only because digital healthcare can be provided in a person’s home at the click of a button but also because it immediately provides the practitioner with the details of the problem, if previously discussed or gives the practitioner immediate access to the records of the patient, which may in a hospital scenario take much longer than intended. Again, another benefit is that if a meeting is scheduled at a particular time, it is more likely to be held at that time instead of the patient having to wait in a long line at the hospital for hours before their appointment is announced. This is a major benefit of the digital healthcare industry.

Cost-Effective

Not only is the industry time efficient but it is also cost-effective. This is because there is a lot more cost involved in visiting hospitals. The kind of funding required for Digital Healthcare facilities at the initial stages may be high but the overall cost will be much less. The treatments when provided within one’s home also reduce the cost of having to be treated at a hospital. Thus, the digitalisation of the healthcare industry may be quite cost-effective in the long run.

Accessibility

The main aim of Digital Healthcare when it first came into existence was providing healthcare from distances. There are remote areas in the country today that may be digitally connected to the world but are not able to physically connect with it. Say, for example, in rural India, in a village that is quite far from the nearest hospital, in case a person is facing any issues, they can directly interact with a practitioner through digital healthcare and visit the hospital only if required. This increased accessibility may extend to several other people. Increasing accessibility is a major benefit of digital healthcare.

Accurate storage of data

Storage of data in real life versus that on a digital platform is definitely more prone to mistakes and issues. Digital information once stored is easy to check and ensure that it is accurate. This is not so easy in an actual hospital or while data is being filled out by a practitioner or patient by hand. There could be easy misinterpretation or misplacement of information in hard copy. However, digital files are much more accurate in storing information that has been input with little to no chances of loss.

Easier storage of data

Not only is information accurately stored, but also easily stored. Digital healthcare ensures that the data of a person is available at the click of a button. This means that large amounts of data regarding a single patient may be found easily. Finding the data of one patient out of several will also require little effort. There will be sufficient storage to store the data and it will cost little to no amount to maintain it unlike in hard-copy as was earlier done.

Autonomy

Autonomy exists in digital healthcare because a patient chooses the kind of service, the hospital, and to quite an extent, the platform through which they intend to carry out these communications. This autonomy allows a patient to better trust the system which may be new for several people in India even today.

Linking with Aadhaar: benefits

Aadhaar linking of medical records comes with its own benefits. It has in fact been used in a number of healthcare schemes since 2013. One such example is the Maternal and Child Tracking System. This system records information of women who are expecting, of delivery of the child and other data related to the pregnancy and child health until the child has been immunised.

Acceptance

In the Future Health Index 2019, the report found that digital health records are widely accepted by both professionals and patients. 87% of the Indians with access to their digital health records would prefer if their healthcare professionals and practitioners also had access to it and 67% of Indians feel comfortable or neutral towards receiving advice from practitioners through a health application on their phone. 64% of Indian healthcare professionals feel that individuals with access to their digital health records have had a more positive overall experience. This proves that many in India have the open-mindedness required to accept digital healthcare which may be highly beneficial in the future.  

Conclusion

The Digital Healthcare industry is currently only a glimpse into what the future holds. In the decade that it has been around, Digital Healthcare has grown significantly, especially in India. With the kind of positive response it has received, proper implementation and protection of the patients’ data can take this platform a long way. 

References

  1. https://www.irglobal.com/article/legal-and-regulatory-framework-for-digital-health-telemedicine-practice-guidelines
  2. https://vikaspedia.in/e-governance/digital-india/e-health-portal
  3. https://www.nhp.gov.in/central-government-health-scheme-cghs-_pg
  4. https://ors.gov.in/index.html
  5. https://www.iaspreparationonline.com/evin-electronic-vaccine-intelligence-network/
  6. https://www.nhp.gov.in/integrated_health_information_program_mtl
  7. https://health.economictimes.indiatimes.com/news/health-it/76-of-healthcare-professionals-in-india-use-digital-health-records-report/70788518
  8. https://health.economictimes.indiatimes.com/news/health-it/india-to-become-the-world-leader-in-digital-health/55154100
  9. https://www.mondaq.com/india/healthcare/902762/digital-health-2020
  10. https://www.mohfw.gov.in/pdf/Telemedicine.pdf
  11. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4394583/
  12. https://www.who.int/bulletin/volumes/98/4/19-237123/en/
  13. https://www.futureoftech.org/digital-health/5-ethics-of-digital-health/
  14. https://www.who.int/bulletin/volumes/97/1/18-227686/en/

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