Two e-surveys were designed to establish what are the primary issues to be addressed when trying to solve the problem of low screening rates in India, and the lack of prevention programs, one each for healthcare providers (physicians and CHWs and one for students. The e-surveys were produced and distributed through REDCap™ (45) as were the informed consent documents. Individuals were recruited through a health clinic, social media, or through non-governmental organizations that work with communities on cancer prevention and control. Inclusion criterion for the HCP survey was that the providers (physicians and community health workers) needed to work in the ICS dental camps. There were no exclusion criteria for this group. The first online e-survey was designed to learn about healthcare practitioners' and CHWs' opinions on screening and prevention practices. OC-DETECT project staff sent out the e-survey to approximately 100 HCPs and CHWs practicing in the New Delhi region who would be responsible in the future for administering screens and referring individuals to dental health clinics. The second e-survey was sent out to 100 young people between the ages of 18-30 attending universities (Sri Venkateswara College and Jamia Millia Islamia, New Delhi). Inclusion criteria were that the students needed to be enrolled in the university. Individuals who had no regular contact with an elder family member were excluded from the study. The students were invited to answer anonymous e-survey questions about their willingness to perform screenings on other family members, their technological capabilities and their knowledge about oral cancer. All survey respondents were compensated with an e-gift card.

Given the formative aims of the surveys (identifying key barriers, facilitators, and feasibility considerations), we used a pragmatic target sample of approximately 100 respondents per survey. This size supports stable descriptive estimates for prioritization (e.g., worst-case 95% margin of error ∼±10% for proportions) while remaining feasible for rapid needs assessment and intervention planning (46).

All quantitative analyses were done using STATA version 15.1 (College Station, TX). Nothing beyond descriptive statistics, such as frequency distribution and cross-tabulations, was conducted.

The purpose of FG#1 was to explore e-screenings and electronic referrals with family members of at-risk individuals. Two focus group discussions were conducted with family members. The two groups included a total of 17 students from Sri Venkateswara College in New Delhi in their first year of majoring in either Life Sciences or Biochemistry at the college. Eligibility included: (1) must be between the ages of 18-30; (2) must own a smartphone; (3) must give voluntary consent; (4) be able to read and understand English or Hindi; and (5) must have a family member at-risk for OC or already diagnosed with OC. Informed consent was reviewed and participants signed paper versions of the Informed Consent at the time of the focus group meetings. All participants were assigned an ID # at the time of the session and no personal names were used during the discussion. Subjects were counseled not to comment on the discussions outside of the focus group sessions. Participants were compensated for their time with e-gift cards. Transcripts and audio recordings were examined for items that would influence the design.

Community health workers (CHWs) and physicians were interviewed 1:1 to learn more about their opinions about the state of oral cancer care in India. Individuals were recruited by ICS via email solicitations to participate. Eligibility included participants must give voluntary consent, be able to read and understand English or Hindi, and to have regular contact in a primary care setting or dental camp with older individuals at risk for oral cancer. All participants provided written consent for audio recordings and informed consent for participation in the sessions. Participants were compensated. A total of six in-depth interviews with community health workers (CHW, n = 3) and physicians (n = 3, i.e., dentist, periodontist, and surgeon) were conducted in individual sessions.

After each focus group session or IDI, a research assistant (RA) used Zoom closed captioning and/or Otter.ai to transcribe the audio recordings. Audio recordings from FGs and IDIs conducted in Hindi were transcribed and translated into English. The transcribed audio file quality was verified by a second RA. We stored the study's qualitative data in Excel tables and created a matrix of questions (columns) by participant/group (rows) and recorded the responses in corresponding cells (47).

Descriptive statistics were used to characterize the participants' sociodemographic characteristics. We considered the discussion data in terms of themes with the goal of noting regularities, patterns, explanations, and propositions contained in the data. We then conducted thematic analysis in which we systematically analyzed the findings from each IDI or FG to identify common themes and similarities and differences. Additionally, we noted substantive quotes as examples of common ideas shared in the responses. Both RAs reviewed the transcripts for themes individually and then compared findings of central themes. Any discrepancies were resolved through discussion between the two RAs.

After completion of the first FGDs and IDIs, an Industry Design Project (IDP) team from Springboard (48) was commissioned to create low-fidelity wireframes (pictures of future app screens) using Figma design software. Springboard is a commercial company that trains individuals to be UI/UX designers. These students participated in this research project to complete their portfolios. They were not compensated. The IDP team developed initial design components, including personas, user stories, and user flows. The outcome of this first round included low and high-fidelity wireframes with the multiple features to be incorporated into a prototype platform consisting of three components, one each for the young family member, clinician, and nurse.

The second round of FGDs were designed to solicit feedback on the low-fidelity wireframes produced by the IDP team for the OC-DETECT application. FGD #2 was conducted with 25 students from Sri Venkateswara College, New Delhi and the students were recruited through convenient sampling strategies with the same eligibility criteria as FGD #1. Mockups or low-fidelity wireframes of the OC-DETECT application were used to assess the aesthetics of the design of the app, the relevance of features as it relates to the target population's needs, identify any missing features, assess the readability of content, determine the ease of use of the user interface, and field questions about preferred educational topics and delivery methods. Participants were compensated for their time with e-gift cards.

The second IDIs were completed by drawing on the same population as the first IDI sessions with CHWs and physicians. Participants were shown wireframes of the first design iteration and asked to comment on the features.

The OC-DETECT app included educational materials to improve knowledge about oral cancer and the value of preventive screenings. Short, micro-learning videos (1–5 min) were produced of educational materials capable of being delivered via mobile phone or tablet, with accompanying PDF-formatted handouts available on the app. These team sourced evidence-based peer-reviewed publications (32, 49–55) and scripts were reviewed by subject matter experts (SMEs). Upon completion of the editing, the scripts were sent to a designer for production into short, animated videos set in an Indian community using Vyond^TM software.

A total of 11 HCPs participated in the e-survey in May 2023 (Supplementary Table S1). All HCPs thought a lack of oral health awareness is a problem in their community. Most of the HCPs (72.7%) reported that they would annually screen a patient over 40 years of age for oral lesions. When HCPs were asked about perceived reasons that oral health was being under-addressed; most of them reported a lack of oral health awareness (45.5%), followed by a lack of concern for oral health (36.4%). Many of the HCPs (90.9%) thought that young family members could use a mobile app to screen for oral lesions. They thought this to be the case as young people are “more tech-savvy” and “hooked on mobiles and apps” which could facilitate the process of oral screening. Many of the HCPs also thought lack of awareness (45.5%) was a significant barrier in seeking help for oral lesions, followed by lack of facilities (27.3%) and other reasons (27.3%) such as oral health not being a priority, tobacco usage, etc. All HCPs thought there was a need for awareness around oral health, cancer prevention, and treatment. About 70% of the HCPs reported they provide materials on oral health to their patients. In the HCPs' opinion, people get wrong health information mostly from peers, friends, relatives and social media (60%) followed by informal health practitioners (10%) and in lay persons in villages (10%). Finally, in the HCPs' opinion the reasons past tobacco campaigns were unsuccessful included: lack of awareness and information (40%), addiction to tobacco products (20%), lack of political will and control measures along with sale of single cigarettes and cheap chewing tobacco pouches (10%), lucrative advertising by tobacco companies overshadowing campaigns (10%), and campaigns being discouraging in nature (e.g., overly fearful messaging).

We further explored young person's existing oral health knowledge (Supplementary Table S2). Young people recognized several causes of oral lesions, including tobacco use (smoke and smokeless tobacco products) (70%), heavy alcohol use (27%), human papillomavirus (21%), and weakened immune systems (16%). Among the young participants a majority agreed that oral lesions could be prevented (97.6%) and treated (97.6%). Many of the participants also thought the lack of oral health awareness was a problem in their community (92.9%). When asked about where they would go to get credible information about oral health, the following resources were listed: physicians (39%), dentists (39%), government hospitals (27%), mass media (27%), social media (25%), private hospitals or clinics (21%), professional organizations (13%), informal health care providers (11%), Ministry of Health (9%), frontline or community health workers (7%), and nurses (4%).

In addition, because we wanted to utilize young persons for the screenings, we explored the young people's access to mobile phones and network connectivity (Supplementary Table S3) and the use of any health-related apps on a mobile phone (Supplementary Table S4). Many of the participants owned a smartphone (97.9%) and paid used a pay-as-you go service plan (83%). The majority of participants had unlimited data plan (68.1%) and text messaging (59.6%). Many of these participants had access to wi-fi at the university or at home (95.7%). A little over one-third of the participants self-rated the stability, reliability, and coverage of the network connection as average. About 18% of the participants currently use any smartphone application to do health screenings. Among those who use these applications, 62.5% used the applications for free and stated the following problems when using them: interface issues, in-app purchases, accuracy, unnecessary advertisements, and network issues. In general, many of the participants (95%) were interested in using camera-phone applications for early detection of oral lesions to screen their family members about 3-4 times per year. Moreover, about 47.5% of participants thought it was of high importance to follow-up patients with a habit or history of detected oral lesions.

The focus group discussions suggest that the family members do not pay significant attention to oral health. This is exacerbated by a general lack of awareness about oral health, with young people themselves having minimal oral health information which was primarily obtained through dental visits. Many participants mentioned the resistance to discussion of oral health and oral cancer, especially among those who consume tobacco on a regular basis. There is a prevalent feeling of embarrassment around oral health which prevents people from accessing oral health providers until the situation worsens. The participants agreed that a mobile app which can deliver information about oral health and oral cancer will increase awareness and enable family members to access the information at their own pace.

There was no culture of regular dental checkups within the families in urban areas and a lack of adequate healthcare services in rural areas. The family members noted they would go to the dentist only if they were in pain and often avoided follow-up visits if the pain receded.

In case of mouth sores, family members would often wait for a few days and try home remedies. If the sore did not heal, only then would they visit a dentist.

Participants agreed that the involvement of a young person in operating mobile apps is beneficial. Participants from rural areas mentioned that discussing oral health with their family members is not an issue but involving them in using the mobile app was difficult due to lack of habit around technology use, lack of accessibility to smart phones and issues with internet connectivity issues. Participants from urban areas indicated it would be relatively easier to discuss oral health and to use a mobile app with their families. The participants mentioned the importance of having credible information on the app and suggested the app have “certification and authorization” to make their family members trust the mobile app. Participants mentioned that younger people were better equipped with skills to use new technologies. However, they also noted that convincing older adults for regular screenings may be difficult due to limited agency in the households.

In our discussion we asked young people if they had heard about a new product that uses an app to help detect oral lesions, and if they could learn to use it to look for oral lesions in their family, would they be interested in trying it. All participants were open to the idea of using the mobile app but highlighted several issues that need to be considered. These included –

Fear around positive diagnosis: Some participants were curious to understand what would happen if a person received a positive diagnosis for a potentially malignant lesions after screening the oral cavity. They noted people might panic and discontinue using the app.

“Also, they have the fear, what if they scan and it turns out to be positive and by not getting scanned it will be better… in ignorance. People are scared about what to do if they turn out to be positive. People tend to go in depression about how they will run their family, etc.” –Young Person

Young people were asked what should be done to make such a mobile app interesting and effective for people to use for oral health awareness and early-stage oral lesion detection. The discussions highlighted several features which could be considered for the mobile app as documented in Table 1.

HCPs noted lack of awareness and knowledge related to oral health in general, and tobacco products (particularly bidis, hookahs, and e-cigarettes) and alcohol use as causes of oral cancers in the community.

HCPs noted several attractions to smoking and chewing tobacco. These include peer pressure, normalization of tobacco use among families, media influence, and stress factors.

We further asked HCPs how oral health is discussed within families. They mentioned how people largely focus around brushing teeth and rinsing the mouth after meals as a means of maintaining good oral hygiene. Besides lack of awareness, most HCPs mentioned accessibility and affordability as barriers to seeking oral health care.

HCPs were asked where people most get information about oral health. According to them, sources of credible information included doctors/dentists, awareness campaigns and television.

Whereas sources of bad information or misinformation on oral health included family or social circle, informal health care providers, movies, and social media.

Many of the recommendations included reducing tobacco consumption and increasing awareness by educating, counselling, promoting discussions in community and interpersonal spaces about screening of oral cavity and early detection of cancerous lesions.

HCPs were asked what they thought about the idea of targeting young people by educating them on oral health awareness and encouraging them to conduct screening of the mouth cavity for their older family members. All HCPs were supportive of the idea. Although physicians thought the approach would work of engaging young people in conducting screenings, they questioned the long-term use of the app by young people and especially those belonging to socio-economically disadvantaged communities.

Nearly all HCPs mentioned that the mobile app needs to be interesting for it to be downloaded and used by people for oral cavity screening. The mobile app should cover information on risk factors and symptoms of oral cancer, impact of secondhand smoke, benefits of screening and early detection, address misinformation related to tobacco smoking and provide resources for tobacco cessation. One of the CHWs noted that besides including information on the harmful effects of smoking cigarettes and chewing tobacco, it would be helpful if the app included information on the use of hookahs and e-cigarettes as well.

According to the HCPs specific features like educational videos and testimonials from celebrities who quit tobacco or oral cancer survivors could be added. Few health care providers mentioned that the mobile app should focus primarily on oral health (and not oral cancer) due to fear and stigma related to the word cancer. Moreover, the information on the mobile app around oral lesions should be framed in an optimistic tone to encourage people to go for oral cavity screenings.

We asked HCPs where they would refer a patient for a thorough oral health assessment. Commonly, a dentist or a health clinic/hospital were mentioned. Most of the HCPs also mentioned cancer screening camps organized by ICS held every month in various parts of New Delhi. HCPs mentioned if a suspicious lesion is detected, the patient is referred to a hospital in their network for further assessment. In general, the barriers to seeking care mentioned by the HCPs included fear of diagnosis and taking time-off work as it results in the loss of day wages.