Keywords
psycho-oncology - Kerala model of health care - medical Innovation - social innovation
- cancer care - Kerala Startup Mission - tech-entrepreneurship
Introduction
Cancer, a pervasive global health concern, not only manifests as a physical ailment
but also intricately weaves through the sociopsychological and emotional fabric and
disproportionately affects individuals and communities. In recent years, the global
rates of cancer incidence and mortality have witnessed an upward trajectory, particularly
in countries such as India. In 2018, cancer accounted for 5.7% of all deaths in India,
making it the country's fifth most common cause of death.[1] The National Cancer Registry Program's data show a steady increase in cancer-related
deaths in India, with 770,230 deaths in 2020, 789,202 in 2021, and 808,558 in 2022.
It is estimated that about one in nine people in India will experience cancer in their
lifetime, with approximately 1,461,427 new cases in 2022.[2]
[3] Disturbingly, the Indian Council for Medical Research reveal a projected increase
in cancer cases to 29.8 million by 2025,[4] emphasizing the urgent need for effective prevention, screening, and treatment strategies.
Amidst these concerns, the state of Kerala emerges as a beacon of hope, establishing
itself as a hub for technological innovations and government initiatives to reshape
cancer care. Kerala has been in the limelight, witnessing cancer incidences of 135
per 100,000 in 2016, surpassing the national incidence rate of 100 per 100,000.[5] Situated on the southwestern coast of India, Kerala has already gained prominence
as a successful model of health care.[5] In recent years, the region demonstrated growth and innovation through collaboration
between startups and the government agency Kerala Startup Mission (KSUM), attracting
national and international recognition.[6] This article highlights Kerala's technological prowess and innovative governance
in integrating psychosocial considerations into cancer care. Recognizing the interdependence
of technology and psychosocial well-being in comprehensive health care strategies,
KSUM, a nodal agency under the state government, fosters a conducive ecosystem for
startups, fostering breakthroughs in cancer prevention, screening, and treatment.[7]
Delays in patients' help-seeking are attributed to various factors, including personal,
sociocultural, and economic factors. One social determinant that frequently dissuades
people from getting cancer treatment is stigma. Cancer stigma negatively impacts patients'
physical and mental adjustment to the disease, leading to poor quality of life, feelings
of isolation, treatment nonconformity, and avoidance of health care providers. This
psychosocial problem affects patients' day-to-day lives, resulting in clinical and
social repercussions, thereby intensifying the burden of the disease.[8]
[9]
[10]
[11]
[12]
[13] Simultaneously, issues of accessibility and affordability create disparities in
the delivery of care, preventing equitable access to life-saving interventions.
Literature Review
The surge in cancer cases in India necessitates a profound exploration of critical
psychosocial factors associated with the disease—primarily, challenges in accessing
treatment, affordability, and the overarching issue of stigma.
Exploring cancer-related stigma reveals its pervasive impact on health equity, giving
rise to exclusion, rejection, and societal blame. The stigma also leads to fear and
shame, which negatively affects people's health and willingness to engage in screening
and care services. While research on the correlation between cancer stigma and health
outcomes remains limited, compelling studies suggest links to delayed diagnosis, heightened
depression, and the attribution of the disease to perceived social norm violations
or a “bad personality.”[12] Drawing on theoretical foundations, Erving Goffman's exploration of the concept
of stigma and its impact on individuals in society[14] and Susan Sontag's cultural and metaphorical perceptions surrounding illnesses[15] provide valuable insights into the understanding of societal perceptions and stigmatization
related to health conditions. These perspectives are similar to the experiences of
those grappling with cancer.[16] Arthur Kleinman also emphasizes the sociocultural dimensions of illness experiences,
underscoring the significance of cultural beliefs and community dynamics.[17] Unveiling the intricacies of stigmatization, shared beliefs, and cultural concepts
such as Karma, researchers have identified tangible consequences, including “social
isolation, gossip, verbal abuse, diminished marriage prospects, and even physical
separation within households,” often highlighting the pervasive impact of cancer stigma
on both patients and caregivers, uncovering the secondary stigma experienced by the
latter.[18]
[19] Moreover, societal perceptions and cancer-related stigma act as formidable barriers
to screening, early diagnosis, and treatment in India, profoundly affecting the overall
quality of life for cancer patients.[20]
Looking at the challenges of health care accessibility and affordability, geographical
barriers and economic disparities often lead to delays in seeking medical assistance
and adversely affect primary, palliative, and survivorship care.[21]
[22]
[23] Sixty-nine percent of India's population lives in rural areas, where access to tertiary
cancer centers is severely limited by issues with accommodations, long travel distances,
and linguistic and cultural barriers.[24]
Cancer care in India is relatively less expensive compared with developed nations
like the United States, but most Indian patients face high costs relative to their
annual income. Due to India's skewed wealth distribution 57% of the national income
is held by the top 10%, therefore cost of cancer care is miniscule for the creamy
layer, while for the majority, even basic cancer care can be catastrophically unaffordable.
The complex interplay of government structures, state budget allocations, low health
insurance coverage, and a predominantly privatized health care system results in substantial
out-of-pocket payments for cancer care even within the framework of existing government-initiated
health insurance schemes such as Government of Kerala's Karunya Arogya Suraksha Padhathi
(KASP) Cancer Suraksha Scheme and the Central Government's Health Minister's Cancer Patients Fund (HMCPF).[24]
[25]
[26]
[27]
However, despite efforts to resolve the issues of accessibility and affordability
through free-of-cost cancer screening, tertiary cancer care, patient navigation, free
transportation and diagnostic services, rural medical camps, and subsidized medicines
and treatment, acceptance remain low even among high-risk groups, highlighting a critical
gap in understanding patient preferences, early treatment and screening facilitators,
and the multifaceted social barriers and enablers of cancer care.[24]
[28] In other words, accessibility and affordability are major psychosocial concerns
which civil societies and state has been trying to resolve, apparently these efforts
has not been fully successful, often due to the lack of emphasis on the third psychosocial
factor—cancer stigma, and its influence on societal participation and use of these
facilities.[19]
Shifting to a broader health care landscape, the transformative impact of the Internet
unfolds, with next-generation networks incorporating sensing capabilities and multimodal
information. This encompasses smart medical and mobile devices, collectively known
as the Internet of Things (IoT). Simultaneously, exploring large-scale domains the
“Omics” paradigm gains prominence. The confluence of the IoT revolution, Omics, and
artificial intelligence (AI) emerges as a potent force poised to reshape health care
delivery.[29] In envisioning the future, Dr. Eric Topol's revolutionary perspective in “The Patient Will See You Now: The Future of Medicine is in Your Hands” envisages a future where the power of smartphones and biosensors shifts authority
from doctors to consumers, advocating for the “democratization” of medicine.[30] These technological advancements provide autonomy, ensure that people can readily
receive medical advice and support by enabling consultations with health care specialists
without requiring actual travel. Digital technology, in particular, empowers patients,
increases awareness, and minimizes the stigma attached to receiving cancer treatment,
thereby providing privacy and closing the gap in accessing health care.
The literature emphasizes the empowering impact of startups and digital innovations,
particularly telemedicine and e-health solutions, ushering in transformative changes
and fostering patient-centered approaches in psycho-oncological care. Thus, technology
is evolving itself as a solution to the psychosocial issues of accessibility, affordability,
and cancer stigma.
As we delve into the multifaceted challenges posed by cancer and the potential impact
of technological innovation in health care, this research article endeavors to explore
the following;
-
How does Kerala state government and its welfare policies, alongside institutions
like KSUM, use technological innovation to address psychosocial challenges in cancer
prevention and care?
-
What's the role of Kerala-based startups and institutions in cancer care within the
Kerala model of tech-entrepreneurship?
-
What initiatives are taken to mitigate social stigma, increase screening and prevention,
improve accessibility and affordability of cancer care, and integrate psycho-oncological
perspectives into the health care landscape of Kerala?
-
How effective are these strategies, as observed in policy documents, reports, and
programs, in implementing holistic cancer care?
Methodology
Sample Design and Characteristics
The research combines a qualitative case study and an exploratory research design.
The study looks into government institutions (n = 8), including KSUM, Centre for Biomedical Research, Innovation and Commercialization
in Cancer (BRIC), Kerala Medical Technology Consortium (KMTC), Kerala Development
Innovation Strategy Council (K-DISC), Centre for Development of Advanced Computing
(C-DAC), Centre for Materials and Electronics Technology (C-MET), Malabar Cancer Centre
(MCC), and Cochin Cancer Research Centre (CCRC) and startups (n = 3) including Sanscan Medtech and Karkinos Pvt Ltd.
Inclusion Criteria
The selection of these cases is grounded in their significant contribution to technological
innovations through startups and collaborations with each other toward cancer screening,
prevention, and care and presence within the regional geography of Kerala. All startups
and institutions involved in technological innovations toward cancer care that were
not based in Kerala were excluded.
Procedure
Data collection primarily involves semistructured interviews with key stakeholders
(n = 23) from the aforementioned entities. Complementing the interview data are an extensive
review of pertinent documents such as policy documents, reports, official statements,
annual reports, product brochures, and media analyses. The media and document analysis
provides a historical context and enhances overall understanding. In addition to interviews
and document analysis, direct observations are conducted in relevant contexts. This
includes participation in government-sponsored events (n = 3), such as CanQuer2019, a 3-day oncology conference on the theme “Technology to
eliminate cancer care disparity, HealthTech”; Technology for Better Healthcare Summit
2022; and KMTC Healthcare Summit 2022. Further, visits to company/institute facilities
(n = 5) were also conducted to gain first-hand insights into collaborative efforts,
innovation processes, and organizational dynamics.
Primary and Secondary Outcome
The primary outcome of this study was the examination of the role of key entities
in the Kerala startup ecosystem in advancing technological innovations for cancer
screening and care. Secondary outcomes include identifying patterns in innovation
strategies, challenges, and collaborations, enriched by thematic analysis and a historical
context from document analysis and direct observations at relevant events and facilities.
Qualitative Data Analysis
Thematic analysis is applied to identify common themes in the data from literature
reviews, government reports, and interviews, focusing on innovation strategies, challenges,
and collaborations. Researchers initially familiarized themselves with the data, coded
to label key concepts related to cancer care, government initiatives, financial support
mechanisms, and technological innovation, and refined preliminary themes through iterative
discussions. These themes are then defined, named, and mapped onto research objectives,
providing insights into the study's questions and facilitating interpretation.
Results
Cancer poses a significant health challenge, and the state of Kerala has responded
with comprehensive government initiatives to ease the burden on patients and ensure
access to essential treatments. These initiatives, characterized by financial aid
and support mechanisms, underscore the government's dedication to enhancing cancer
care in the region.
Kerala's Cancer Control Program: A Holistic Model
Kerala's cancer control program, initiated in 1988, is a robust and adaptive model
addressing multifaceted challenges in cancer care. The program's emphasis on primary
prevention has proven effective. Another crucial aspect tackling the issue of accessibility
is early detection, facilitated by village-level volunteers, screening camps, and
the establishment of “Early Cancer Detection Centres,” particularly in rural areas. District-level cancer control societies integrate
these efforts into the broader health infrastructure, ensuring a comprehensive and
sustained approach to early diagnosis and intervention. Human resource development
is a cornerstone, with the Regional Cancer Centre (RCC) conducting various training
programs for health care professionals. The RCC's role extends to cancer registration,
providing essential data for shaping program strategies and evaluating outcomes. The
RCC in Kerala demonstrates holistic patient care by offering a free food scheme for
below poverty line patients and operating a free medicine bank. These initiatives
provide nutritional support and essential medications, including chemotherapy drugs,
at no cost, relying on contributions from well-wishers to overcome financial constraints
for cancer patients.[31]
The “Kerala Cancer Care Grid (KCCG),” a collaborative network encompassing cancer care facilities, plays a vital
role in the state's cancer prevention efforts. Entrusted to the RCC, the KCCG contributes
significantly to an inclusive cancer prevention and control program aligned with the
Kerala Cancer Control Strategy (2017–2030).[32] It ensures equitable access to affordable cancer detection and treatment within
a 50-km radius of individuals' residences, emphasizing inclusivity. Kerala's cancer
control efforts extend beyond clinical interventions. Palliative care, initiated in
1986 and provided as part of the grid, showcases the state's commitment to addressing
the holistic needs of cancer patients. Palliative care units, home visit programs,
and initiatives to make pain relief more accessible reflect a compassionate and patient-centric
approach.[22] This approach not only provides accessibility and affordable care, but tackles the
issue of cancer stigma by encouraging societal participation in its activities.
Additionally, unique initiatives like the “Cancer Care for Life” insurance program, launched in 1986, have further democratized access to cancer
care by providing financial assistance. This innovative insurance model, entailing
a one-time payment for a lifetime of coverage, has benefited thousands, demonstrating
a commitment to financial inclusivity. Kerala's cancer control program is a comprehensive,
community-driven model characterized by preventive measures, early detection strategies,
human resource development, and a compassionate approach to patient care. The integration
of these components, coupled with political will and community involvement, underscores
the program's success and positions it as a valuable blueprint for cancer control
in developing societies.[31]
Government Financial Aid
Kerala has instituted a series of comprehensive initiatives to support cancer patients.
Chief Minister's Distress Relief Fund, Cancer Suraksha Scheme, KASP, Sukrutham Scheme,
and Comprehensive Health Insurance Scheme Plus provide financial assistance and subsidized
treatment for cancer patients.[33] These initiatives collectively demonstrate Kerala's strategic and multifaceted approach
to addressing financial barriers, ensuring affordability, and providing support for
emergencies and vulnerable demographics in the realm of cancer care.
Role of Technological Innovation in Cancer Care and Support in Kerala
KSUM has emerged as a pivotal force in fostering innovation and support for startups contributing
to the health care sector. The third annual symposium on “Technology to eliminate
cancer care disparity,” organized by the CCRC and KSUM in 2022,[34] exemplifies the state government's commitment to bringing new technologies to grassroots
levels, thereby minimizing disparities in cancer care. The symposium facilitated discussions
on leveraging technology for improved cancer care outcomes, patient education, and
effective linkages between clinicians and startups.
One notable program supported by KSUM is the BRIC, an incubation program in Kochi
that intends to reduce cancer deaths through technology-based, socially impactful
startups. Furthermore, KSUM's collaboration with the MCC through a memorandum of understanding
aims to establish a cancer care startup ecosystem in the state. This collaborative
effort emphasizes the establishment of a medical incubator for cancer research, fostering
cross-functional innovation. The incubator, situated at the Kerala Technology Innovation
Zone, Kinfra Hi-Tech Park, Kalamassery, seeks to bring together researchers and startups
to develop solutions for early cancer detection, exemplifying a holistic approach
to cancer care.[35]
Startups incubated or nurtured by KSUM, such as Sanscan and Karkinos, showcase significant advancements in cancer care. Sanscan Medtech and its innovative
OralScan are the first multimodal image-capturing devices that use multispectral imaging
technology at their core for noninvasive and real-time screening of oral cancer and
biopsy guidance. Their proprietary software, Sascan developed to operate OralScan,
is intuitive and easy to use. The service provides higher accuracy and lower per-patient
cost, thereby tackling the concern of affordability of cancer screening. This encourages
large-scale adoption and helps save millions of lives every year. The startup won
the National Startup Awards 2021. The ease of application and affordability of the
service offered by the startup is a solution to the major challenges of cancer prevention
in India.[36]
Similarly, Karkinos, another startup nurtured by KSUM, has focused on developing personalized
cancer care solutions and offer psychosocial care to cancer patients. They have been
recognized by the National Health Authority for their exceptional contribution to
the Ayushman Bharat Digital Mission.[37] Their platform employs AI to tailor treatment plans based on individual patient
profiles. Recognizing the psychosocial challenges associated with cancer, Karkinos
integrates features for mental health support, offering in-app resources for coping
with emotional distress, connecting users with mental health professionals, and fostering
a supportive online community. The results highlight instances where cancer patients
utilizing Karkinos' mental health features reporting increased resilience, improved
emotional well-being, and a sense of empowerment throughout their treatment journey.
Moreover, collaborations between research institutions like the C-MET, C-DAC, and
MCC have resulted in ground-breaking innovations. Notably, a wearable screening device
developed by Ms. A. Seema, a scientist at C-MET, for early breast cancer detection
has received national recognition.[38] This innovative device utilizes highly sensitive thermal sensors to detect temperature
variations caused by cancer cells, providing a noninvasive and user-friendly alternative
to traditional mammography. Clinical trials have shown results comparable to standard
diagnostic tools like mammograms, ultrasounds, and computed tomography scans, addressing
challenges in breast cancer screening in India. This portable, affordable, and easy-to-use
diagnostic tool has the potential to reduce the stigma of cancer screening, by getting
the device to the doorsteps of common people. The Accredited Social Health Activist
(ASHA) workers (ASHA is a health activist in the community who will create awareness
on health and its social determinants and act as interface between the community and
the public health system) taking the lead to introduce it aim to reduce the stigma
and emotional concerns of going to clinics and laboratories for mammograms.
The collaboration of KSUM with K-DISC and KMTC has brought commendable results. Further,
this collaboration also known as the KMTC aims to establish Kerala as a medical device and technology hub, fostering innovation,
research and development, technology development, and manufacturing through a “Beyond
Cluster” model that encourages collaboration and natural development. It brings together
key stakeholders in research and development, academia, health care, MedTech companies,
startups, and the government in bridging the gaps and empowering individuals and institutions
to foster the growth of MedTech in the state. K-DISC is the Kerala Government's nodal
agency to facilitate Kerala's transition to the knowledge economy apart from making
Kerala an innovation hub.[33] In collaboration, these institutions have developed an AI-based system for automated
cervical cancer screening using liquid-based cytology, aiming to streamline pathologists'
work and improve case handling. The cervical cancer screening via Pap smear analysis
is performed in the form of health care camps in the rural parts of the state by K-DISC
trying to resolve the issues of accessibility and affordability.
Further, along with their technology partner Evelabs Private Limited, they use IoT,
a technology component employed to create Dripo. This simple, portable, connected
infusion monitor is helping health practitioners to set infusion rates accurately
and monitor them from anywhere. This project is in trial at the MCC. They are also
in the initial stages of developing an e-health portal, a single access point for
disseminating all information using a multilingual AI chatbot with voice communication
capabilities.[33]
Similarly, “I CAN” app developed by Dr. Manu, a cancer survivor and assistant professor
at Cochin University of Science and Technology (CUSAT), under the 2-lakh seed money
of the CUSAT project titled “Development of Gamified Health Care solutions of patients
suffering from cancer,” features game elements such as points, badges leaderboards,
storytelling, etc. to help patients interact with the experiences of other patients
and survivors and thereby maintain a positive attitude while undergoing treatment.[39]
In conclusion, government-supervised approaches of KSUM foster innovation in cancer
care through technological advancements, incubation programs, collaborative partnerships,
and startup support, aiming to revolutionize cancer care and addressing challenges
like affordability, accessibility, and stigma.
Discussion
The results highlight Kerala's commendable efforts in initiating a transformative
approach in cancer care, encompassing a multifaceted approach that includes government
initiatives, financial aid, and technological innovations. Examining the possible
impacts of these results, it becomes evident that the comprehensive cancer control
program and financial aid schemes could significantly alleviate the burden on patients,
particularly those from economically vulnerable backgrounds. The emphasis on primary
prevention, early detection, and the inclusive KCCG implies that individuals might
have better access to timely and affordable cancer detection and treatment within
their vicinity, ultimately improving health outcomes.
These results translate into tangible benefits in the day-to-day lives of potential
patients and survivors. The financial aid initiatives, such as the HMCPF and the KASP,
provide substantial assistance, addressing economic barriers to cancer care. For survivors,
the on-going support, exemplified by initiatives for rehabilitation through apps like
I CAN, suggests a sustained commitment to holistic patient care, potentially easing
the challenges faced during and after treatment.
These results carry implications for various stakeholders. For patients and their
families, the financial aid programs mean reduced financial stress, increased accessibility
to essential treatments, and improved overall well-being. The government's role in
initiating and sustaining these programs signifies a commitment to public health,
potentially fostering trust and satisfaction among citizens. Hospitals and health
care professionals, particularly through the collaborative Cancer Care Startup Ecosystem,
stand to benefit from technological innovations that enhance early detection and personalized
treatment plans, thereby improving the quality of care.
Furthermore, the new understanding derived from these results holds promise for advancing
psycho-oncological support for potential cancer patients and survivors in Kerala and
beyond. The recognition of the psychosocial challenges associated with cancer, as
exemplified by the startups like Karkinos and the app I CAN, introduces a paradigm
shift in cancer care. Tailoring treatment plans based on individual patient profiles
and integrating features for mental health support signifies a holistic approach that
acknowledges patients' emotional well-being. This could lead to improved coping mechanisms,
increased resilience, and a sense of empowerment among cancer survivors. The collaborative
efforts between research institutions and startups, as seen in projects like Dripo
and the cancer screening tool by C-MET, also indicate a focus on patient-centric technologies
that can enhance the overall cancer care experience. These collaborative efforts initiated
with government support increases its acceptance within the public and are a solution
to the significant concern of cancer-related stigma. Overall, the Government of Kerala
and its welfare policies for improving the lives of the people of the state have come
into play in initiating, mentoring, and nurturing various programs to provide technological
innovation in medical and psychosocial cancer care.
Conclusion
The intersection of technology and psycho-oncology holds immense promise in revolutionizing
cancer care potentially impacting patients, survivors, and various stakeholders. Incorporating
telemedicine and e-health solutions has demonstrated tangible benefits in providing
accessible and personalized psycho-oncological support. Despite challenges related
to stigma and resource constraints, the opportunities for improvement through awareness
campaigns, training programs, and collaborative initiatives are substantial. The article
highlights the transformative role of technological entrepreneurship in cancer care
within Kerala, India, focusing on initiatives led by KSUM and its collaborations with
various startups and governmental institutions, exemplifying innovations in early
cancer detection and integrated psycho-oncological support. While showcasing notable
successes, the study acknowledges limitations, including potential bias in representation
and regional specificity. Future research and innovation in cancer care could improve
psychosocial support, scalability, and sustainability through tele-medicine and e-health
solutions and reduce cancer stigma through targeted awareness campaigns and training
programs. This could improve access to timely diagnosis and treatment, reduce financial
burden, and enhance patient quality of life. However, replicating these advancements
in other states may face challenges like resource constraints, cultural variations,
policy differences, and technological infrastructure disparities, necessitating tailored
strategies and interstate collaboration.
