Edith Elliot is tapping into an underutilised resource -- families of patients -- and equipping them to play a pivotal role in the healthcare system. By providing skills, awareness and tools to family members who accompany patients in hospitals, Edith is reducing their dependence on medical professionals like doctors and nurses, curbing the rates of re-hospitalisation and ensuring a smooth transition to and proper care at home.
The New Idea
Edith is equipping hospitals and nurses to leverage families of patients as caregivers. She is institutionalizing this by partnering with hospital chains and training “nurse-educators” from their staff to in turn train family members to take over these procedures through video tutorials and practical demonstrations. ‘Nurse educators’ leverage the inherent compassion and keenness of family members to help bridge the human resource gap in hospitals, and reduce the excessive dependence on medical professionals even for simple procedures. Families administer routine medical procedures like checking temperature, blood pressure or watching for warning signs in post-operative care. By identifying resources and talent within the hospital system to implement this program, Edith builds their capacity to adopt this platform seamlessly within hospital procedures at a nominal cost ($1 per trainee).
In 18 months of operations, in partnership with 16 Narayana Hospitals (run by Dr. Devi Shetty, an Ashoka Fellow) and two government hospitals, Edith has enabled the training of 15,000 family members in eight cities across India. As a result of their training there has been a 36% reduction in post-surgery complications for patients, and a 22% reduction in hospital readmission for patients.
Edith has also developed a strong feedback mechanism that enables hospitals to track the success of this program, and subsequently ease the resource crunch in their system and introduce qualitative and empathetic care to patients in an efficient and timely manner. The feedback has also enabled Edith to build training programs around more common conditions (diabetes, infant care and cancer). Taking over from Edith and her team, hospitals can run and customise their own caregiver training and awareness platforms by leveraging the talent and infrastructure available to them.
Currently, the Indian healthcare system can only provide 1 doctor per 1700 patients. Worsening this human resource gap in hospitals, the staff spend a majority (about 70 percent) of their time performing simple, non-medical tasks for patients such as checking vitals or keeping track of their diet. In an overburdened healthcare system like India’s, focus on these tasks as well as medical ones results in a massive strain on hospital infrastructure and human resources. This eventually leads to a lower quality of care delivery to patients. The rushed nature of care provided is also considerably less sensitive and empathetic, given the time and resource crunch on the system.
Despite this, no system exists to distribute the responsibility of care to non-medical stakeholders, who are usually family members. Family members currently have no role, or say, in the delivery of healthcare to their loved ones. From the point of admission of a patient until discharge, the role of family is minimised to waiting as their loved ones are treated by the medical staff. However, on account of their inherent empathy and concern for their loved ones, family members are potentially best positioned to provide timely and attentive non-medical care, both within and outside of the hospital. In a resource-poor setting like India, this role becomes increasingly important as the demand for healthcare increases, but the numbers of caregivers remain low, and restricted to medical and institutionalised staff.
The role of family members becomes even more important after the discharge of patients. For instance, post-surgery, the chances of contracting an infection while the dressing is being changed is very high. When done at home, this risk increases if the family member is not equipped with the correct information on maintaining hygiene when touching the wound. This and other kinds of avoidable complications often result in frequent re-hospitalisation and drastically increased out-of-pocket cost for rural, low-income patients. These rural families also seldom have access to online journals or articles to learn best practices post-hospitalisation, an advantage that urban and peri-urban families can leverage. In addition, there are several myths surrounding illness and healing in villages that often impede the recovery of the patients. For instance, it is believed that a person operated upon should not be bathed, which could potentially lead to severe infection of the surgery wound. Without the knowledge or ability to help, family members don’t see themselves in the caregiver role, and depend completely on the medical system for recovery.
Even though a few hospital education programs exist, they are mainly centered around informing the patient about care practices (timely medication, hygiene, checking vitals). While in theory this task-sharing measure can be empowering, patients are often recovering from their treatment and unable to fully grasp the content of such an awareness program. In addition, most family-oriented training modules are targeted towards specific caregivers, such as those of palliative patients or parents of chronically-ill children. However, without proper demonstration of care-giving routines backed by relevant information, family members learn little from pamphlets handed to them during discharge. In addition, these specific modules are of little value to a larger pool of family caregivers.
Built on the principles of user-centric design, Edith and her team at Noora Health designed the training curriculum by shadowing family members to ascertain the kind of questions they asked nurses and what form of content would be easiest for them to absorb. Based on these constant feedback loops and iterations, Edith and her team created modules around simple practices of care that cut across different types of ailments, and could be easily taught to caregivers by medical staff. In order to break away from the standardised way of disseminating information (through pamphlets, etc.), the team crafted videos in regional languages that connect automatically with their audience. Similarly, for a low-income population, many of them illiterate and unfamiliar with a classroom atmosphere, Edith decided that shorter lessons, with more emphasis on practical demonstration would be helpful.
Edith saw hospitals as a crucial entry point to introduce this ‘Care Companion Program.’ Not only do they allow her access to a large number of family members to train, but also to talent and infrastructure to institutionalise this training at a critical point when family members are most free and willing to learn care practices they can use later at home.
In each hospital, Edith collaborates with the administration, often nursing superintendents, who then hand-pick nurses to train as educators. Training nurses who are heads of wards helps Edith and her team create more acceptability and ownership of the program, as nurse-educators find this a way to improve their own skills in helping patients and their families. Over two weeks, Edith’s team helps develop key teaching skills in these educators and translate their knowledge of patient care into easily understandable and transferable skills.
While trained for a specific set of care activities, through the Care Companion modules, nurse-educators are encouraged to develop the family modules constantly through feedback from their classes, giving them a platform to improvise at the facility-level. For instance, observing that family members wanted more information about what to do during emergencies, a few nurse educators have now created modules on emergency life support for the caregivers. In order to incentivise nurse-educators to take more ownership of the program, Edith has created peer-learning platforms across hospitals. Nurse-educators can swap techniques, best teaching practices and challenges from different facilities, and enable a supportive community that helps them build a new skill-set.
By training nurse-educators to manage the program within hospitals, Edith reduces the need for a hospital (and Noora) to hire and train external staff at a high cost. Designed especially for high-turnover facilities, Edith’s platform offers hospitals potential for reduced spending on medical staff, better skilled nurses and decreased length of patient stay, thus allowing them to serve more patients. Through a cross-subsidisation model, Edith offers this platform free of cost to government facilities while charging private facilities for customising the program, thus further lowering entry barriers into the public health system. With the help of the quality control and nursing departments, Edith is now trying to both upskill nurses by incorporating Noora’s modules in their own nursing training, as well facilitate internal monitoring systems to ensure that these classes are run in a timely manner.
From the point of admission of a patient, family members are given the option to attend 45-minute sessions with nurse-educators to learn the basics of caregiving. Once at the session, the nurse-educator teaches through video content and practical demonstration simple non-medical tasks that are emulated by family members. For instance, a class on taking blood pressure would involve a dramatised video depicting the correct methodology, the benefit of checking blood pressure regularly and the accepted range within which it should stay. These videos are further reinforced by a practical demonstration in the ward, to help family members practice taking blood pressure with an actual machine, or checking the pulse on their patient. This time also serves to correct their technique and answer doubts. The training helps transfer simple yet effective tips for family members: how and when to exercise; what to avoid eating; what to do when a patient is out of breath. The caregiver’s ability to undertake these minor tasks greatly reduces the stress on the system to make floor nurses and attendants available constantly.
Operationally, Edith partners with the administration to institutionalise and customise the platform. In order to streamline this platform into the hospital’s routine, Edith works with the nurse-educators to incorporate these training and practical sessions for family members during their regular rounds of the wards, so as to not add on extra hours of manpower. The flexible nature of the modules helps the program sync in with the vast range of hospital capacities, demographics and infrastructure in India. For instance, in government facilities that face a severe resource and space crunch, the entire training -- video and practical sessions -- are done within the post-operation ward as opposed to in an AV room in private hospitals. In this manner, the training reaches out to more caregivers at one time. To ensure continued compliance post-discharge, during their stay, family members are guided by the nurse-educators to fill in simple charts that track the patients’ vitals, exercise routines and dietary restrictions. Constant revisions and feedback from the nurses helps instil the knowledge and skill in the family member, thus empowering them to be caregivers post-hospitalisation.
In order to track the effectiveness of the training platform, Edith and her team conduct home visits to patients within 30 days of their discharge. Through a combination of these visits and phone surveys, Edith has been able to demonstrate the effectiveness of the program to bring down rates of re-hospitalisation and receive feedback on the usefulness of the training. In collaboration with the facilities, Edith is now institutionalising a 30 and 60-day detailed phone survey and reminder system to support caregivers post-hospitalisation with reminders about medication adherence, hygiene advice and warning signs to report to the doctors during regular check-ups. By doing so, Edith is enabling an institutionalised culture of support for this new cadre of caregivers. Run initially by Noora, Edith envisions this survey as part of a hospital’s follow-up routine, where the focus lies not only on the patient but also on continuous empowerment for the family members.
Currently targeted towards caregivers of post-surgical patients, Edith’s team is now working on new content incorporating diabetes, pre-term infant care and cancer, based on trending concerns and questions of family members. Noora is also incorporating real-time dashboards as part of the feedback loop to help hospitals track re-admissions, patient flow and impact of the training program. By charging private hospitals a fee to train nurse-educators, establish the post-program evaluation and phone-based reminder system, Edith cross-subsidises the program run in public health facilities. This cross-subsidised scaling method, Edith believes, will not only generate a sustainable revenue stream for the organisation, but also help enable better metrics on customer satisfaction for multi-chain private hospital brands. Currently in partnership with Stanford University, Noora has also launched a pilot study to determine quantitative and qualitative results of the training program among families, and is leveraging the findings to build a case for family-led care within hospitals. Beginning with the Narayana Hospital chains in Mysore, Hyderabad, Chennai and Jaipur, Edith is gaining a foothold in the public health sector by tying up with two government hospitals this year.
Caregiving and community support have been the cornerstone of Edith’s early life in a small town of Telluride, Colorado. At 15, her mother was diagnosed with a tumour in her brain. It shook Edith to watch her mother’s mental capacity deteriorate in front of her, and pushed her to become the new bedrock for the family. Edith intuitively took up the role of primary caregiver, and helped her mother re-learn the basics of everyday life like walking, eating, changing herself and even writing. Humbled yet empowered by this experience, Edith understood the forbearance and patience it took for a caregiver to nurse a patient back to health, and how despite their best intentions, they often lacked the tools and insight necessary to do a satisfactory job.
Despite her own personal struggle at home, Edith developed an early passion to help the community as she took on the role of an advocate for sexual education in high school. Touched by her neighbour’s battle with AIDS, which he eventually lost, Edith started the Telluride Sexual Awareness Program in schools, where she created sex-ed curriculum for teachers (to train students) based on safe sex rather than abstinence, which was the political sentiment of the time. Edith found creative ways to circumvent the abstinence diktat and institutionalised the program in Telluride’s schools and community, which continues to spread awareness about safe sex and sexually transmitted diseases.
This early experience in caregiving and community mobilisation strengthened Edith’s resolve to work on health-related issues in a global context. Inspired by thought-leaders during a stint with the Aspen Institute, Edith joined PSI to build and implement health awareness programs in African countries. Edith worked closely with communities, delivering behaviour change campaigns on-the-ground around HIV, but eventually disturbed by the high levels of bureaucracy in large non-profits, realised that her interest was in impacting healthcare policies instead of as a doctor or a non-profit community worker.
To further her interest in global health policy and system design, Edith joined Stanford’s course on designing for extreme affordability, and founded a multidisciplinary team to focus on India’s overburdened hospital system. With experience working outside of hospitals in communities, Edith now saw the massive strain on medical institutions in developing countries to deliver quality healthcare. To make a systemic dent, Edith realised that every stakeholder in the care process needed to be involved and hence designed a small pilot to teach family members of patients simple medical procedures that didn’t require any expert medical knowledge. The results of this fairly intuitive process astonished Edith and her team, and set her on the path of creating a full-fledged knowledge and training platform for family members.