“Should I Let Them Know I Have This?”: Multifaceted Genetic Discrimination and Limited Awareness of Legal Protections among Individuals with Hereditary Cancer Syndromes

Hereditary cancer syndromes (HCS) represent approximately 1 in 10 of all cancer patients [1]. HCS occurs when a pathogenic gene variant increases cancer susceptibility [1]. HCS patients are more likely to develop cancer, have multiple cancers, and experience an early onset of cancer [1]. Patients may be diagnosed with an HCS even without having developed cancer, and they may or may not develop cancer in their lifetime [1]. HCS encompasses various syndromes; hereditary breast and ovarian cancer syndrome (HBOC) and Lynch syndrome (LS) are the most prevalent [2]. HCS patients require lifelong interdisciplinary care, which may include genetic testing, surveillance, and prophylactic surgery [3]. In addition to medical burdens, patients also experience socioeconomic burdens, which refers to both psychosocial and financial burdens associated with their condition [4]. These burdens – such as lost earnings, negative impacts on career and educational opportunities, and stigma and discrimination – have been widely examined for cancer patients, but have largely been unaccounted for HCS specifically [5‒7]. Individuals with HCS are at risk for multiple cancers which may have broad impacts on lifestyle, medical, education, career, and reproductive choices [1]. Furthermore, in terms of stigma and discrimination, individuals with HCS may face genetic discrimination, which refers to negative treatment, unfair profiling, or harm based on actual or presumed genetic characteristics rather than due to the physical manifestation of disease [8]. In the HCS context, an individual may face genetic discrimination on the basis of their genetic risk for cancer rather than an actual cancer diagnosis.

Stigmatization is a social process that involves distinguishing and labeling some feature of an individual and linking this feature to a negative stereotype [9]. Specifically, Link and Phalen define stigma as the co-occurrence of components of labeling, stereotyping, separation, status loss, and discrimination [9]. “Felt” stigma refers to ostracization even if the individual cannot substantiate actual discriminatory experiences resulting from stigma [10, 11]. “Enacted” stigma involves actual discriminatory acts committed against targets of stigma [10, 11].

Previous studies have documented concerns and experiences of genetic discrimination in other patient populations, such as individuals at risk for Huntington’s disease, hemochromatosis, hypercholesterolemia, and HCS [12‒15]. In these populations, patients describe fears that third parties (e.g., insurance companies), their personal circles (e.g., family and friends), and their professional circles (e.g., employers) may use their genetic information against them [12‒15]. Concerns and experiences of genetic discrimination perpetuate barriers along patients’ care journeys, from promoting disinterest in genetic testing to experiencing insurance coverage denials to being blamed for bringing a genetic condition into the family [12‒14, 16, 17]. In the past, patients with high levels of genetic discrimination concern were more likely to pay for genetic testing out of pocket, use an alias when accessing testing or request exclusion of test results from their medical record [12, 13].

To address potential and actual incidences of genetic discrimination, the Canadian Genetic Nondiscrimination Act (GNDA) was passed in 2017 [18, 19]. Prior to the GNDA, legal protections against genetic discrimination were limited. Although the Canada Labour Code and Canadian Human Rights Act protected broadly against discrimination, they did not include specific provisions to address discrimination on the grounds of genetic characteristics; with the GNDA’s passage, both the Canada Labour Code and Canadian Human Rights Act were duly amended [19]. The GNDA makes it a criminal offense for “anyone entering into a contract with a person to require or compel that person to take, or disclose the results of, a genetic test” [18, 19]. This law applies to everyone in Canada, including employers, insurance providers and educational institutions [18, 19]. However, prohibitions concerning genetic tests, disclosure of results and written consent do not apply to healthcare practitioners in respect of an individual to whom they are providing health services or a person who is conducting research with respect to an individual participating in the research [18, 19]. GNDA protections also do not apply to family history, diagnosis of manifested disease or symptoms of disease [18, 19]. Similar legislation has been enacted in the USA and many European countries [20].

Genetic discrimination among the HCS population remains largely unexplored in the literature; this is compounded with limited research on efficacy of the GNDA since its passage. Our study aimed to address these gaps by describing concerns and experiences with genetic discrimination that HCS patients may face on their care journey.

We used qualitative methodology to explore socioeconomic burdens faced by individuals with HCS. Topics explored included health system experiences, financial burdens, psychosocial and lifestyle impacts, and experiences with discrimination/stigmatization. This study exploring genetic discrimination among HCS populations was a sub-analysis of the larger study aimed at exploring these broader socioeconomic burdens. Qualitative methods provide rich data on individual experiences, concerns, and perspectives [21]. An interpretive description approach informed data collection and analysis, which considers participants’ lived experiences to understand how individuals construct and make meaning of these experiences [22]. Interpretive description allows for the identification of themes and patterns among participant experiences [22]. This is a commonly used qualitative methodology in health service research due to its context-sensitive applications to inform policy and medical practice recommendations, which is suitable for the goals of this study [23]. Ethics approval was obtained from Research Ethics Boards at Unity Health in Toronto, Canada (REB#3855); BC Cancer in Vancouver, Canada (REB#H21-03579); and Memorial University of Newfoundland in St. John’s, Canada (REB#2022.014). All participants provided written and verbal informed consent for all research activities associated with this study, consistent with the ethics-approved protocol.

We conducted semi-structured interviews with individuals with HCS from Newfoundland and Labrador (NL), British Columbia (BC) and Ontario (ON), Canada. Majority of participants were recruited through hereditary cancer clinics at which some co-authors are affiliated and employed. Healthcare professionals (physicians and genetic counselors) described the study and provided study information sheets in person, via phone, or via email to eligible patients who had previously consented to be contacted for research purposes. Eligibility criteria included participants with or without a history of cancer with molecularly confirmed HCS (20 LS genes and 20 HBOC genes per province), 18 years of age or older, and who could speak and read English. To gather a broad range of HCS experiences, purposive sampling was used to attempt to achieve a diverse sample across different demographic factors. Where possible, we applied maximal variation sampling across ages, geographic regions, and gender in an effort to document unique experiences and to identify important common patterns that cut across experiences [24]. Particular experiences of a given individual were not known to the study team prior to the qualitative interviews. The target sample was 40 participants per province to achieve thematic saturation and compare across HCS subtype and province.

Data collection activities were coordinated by St. Michael’s Hospital (ON), BC Cancer (BC), and Memorial University of Newfoundland (NL). Semi-structured phone and video call interviews were conducted between July 2022 and February 2023 by team members with qualitative interviewing experience. Each interview was approximately 30–60 min in duration. An interview guide (online suppl. material 1; for all online suppl. material, see https://doi.org/10.1159/000542210) was developed based on literature review, mock interviews and patient partner consultations to ensure appropriate content, language, and flow. Interviews explored participants’ experiences, concerns, and perspectives on their HCS care journey, such as healthcare experiences, psychosocial, lifestyle, and financial burdens. Consistent with best practices for qualitative research, the interview guide was refined in an iterative manner with study team discussions as new themes emerged, including Domain 7: Unfair treatment/stigmatization [25].

Interviews were audio-recorded and transcribed verbatim. Standardized demographic information was collected to describe the sample, including age, gender, education, clinical diagnosis, and province of residence.

Transcripts were thematically analyzed using constant comparison. Constant comparison is an iterative qualitative methodological procedure that facilitates data collection and analysis, whereby each new emerging data point (code, theme, or sub-theme) is compared to the existing dataset and codebook to refine or amalgamate codes and themes as analysis and interviews continue [26]. This method ensures that themes and conclusions remain closely grounded in the data, thereby substantiating validity [26]. Initial steps involved developing a codebook, which was created using the interview guide, mock interviews, and patient partner consultations. This codebook was built by the study team in a consensus manner through discussion after preliminary analysis of the data. Parameters, code definitions, as well as instructions and examples, were discussed by the study team (Table 1). Six members of the study team coded the interviews in a consensus manner, which is a commonly used approach in qualitative research [27]. Discrepancies between coders were resolved through discussion.

Data analysis occurred iteratively and simultaneously with data collection to explore emerging themes and revise the interview guide and sampling strategy accordingly. Initial codebook categories were deductively driven by content sections in the interview guide, such as health systems and financial and psychosocial impacts. Codebook revisions (code applications and definitions) were inductively driven based on mock interviews with patient partners and preliminary data analysis. Emergent and existing findings were constantly compared; all analytical decisions were documented. Participant characteristics were summarized using descriptive statistics.

Throughout the analysis, team members engaged in reflexivity by examining beliefs, assumptions, and experiences related to the HCS care journey that could affect the interviews or interpretation of findings. The collaborative analysis process allowed the analysis to progress to a higher level of data conceptualization.

Seventy-three participants were interviewed. Representation from each province (ON: n = 26, BC: n = 23, NL: n = 24) and HCS subtype (HBOC: n = 39, LS: n = 34) was relatively equal. As thematic saturation emerged earlier than expected, we revised our target sample to approximately 25 participants per province. Most participants were female (n = 51/73) and White/European (n = 54/73). Slightly over half of the sample (n = 41/73) had been affected by cancer. Participant characteristics are summarized in Table 2.

The issue of genetic discrimination emerged without deliberate prompting from the interviewer and became a pervasive topic across interviews. The interview guide did not include explicit questions surrounding genetic discrimination; rather, participants spontaneously shared concerns (hypothetical fears) and experiences (actual discriminatory incidences) of genetic discrimination when responding to questions in other content sections. Two themes pertaining to genetic discrimination emerged. First, participants described multifaceted concerns and experiences of genetic discrimination. Second, participants held varied perceptions of the GNDA, mostly valuing the intent of the GNDA but simultaneously demonstrating a limited awareness of its protections. These themes were consistently emphasized across HCS subtypes and provinces. The following sections elaborate on this overview using illustrative quotes (full quote summary, Table 1).

Concerns and experiences of genetic discrimination of individuals with HCS, encompassing both “felt” and “enacted” stigma, were highlighted in healthcare, insurance, employment, and family and social settings.

Participants described experiences wherein a lack of knowledge from healthcare providers, such as physicians, genetic counselors, and medical trainees, promoted hurtful assumptions about their HCS risk and care needs. Participants described some providers exhibiting an unawareness of HCS’ genetic origins and its unique care needs, such as frequency of surveillance. Ignorance and misconceptions held by providers could lead to offensive patient-provider interactions, thus representing “felt” stigma. For instance, one participant experienced a medical student demonstrate unawareness of HCS’ genetic origins by implying that the participant’s family brought the HCS risk upon themselves by engaging in consanguinity:

Participants also described experiencing “felt stigma” in the form of judgment and unsolicited advice from healthcare providers for deciding to access genetic services. Many individuals noted that the decision to undergo genetic testing was a highly personal one resulting from contention between the desire to know one’s cancer risk and the perceived consequences of receiving a positive test result, including concerns of genetic discrimination. Thus, when participants completed their decision-making process and chose to access HCS-related care, they were distressed by having healthcare providers express “felt” stigma against this choice manifesting as bias in clinical recommendations:

In a few instances, the individual developed a negative attitude about their care due to feelings of disempowerment in healthcare decisions and the deterioration of the relationship with their healthcare provider, leading the individual to switch to a new healthcare provider entirely:

Participants described experiences of “enacted” stigma in terms of receiving lesser coverage, paying higher premiums for the same coverage, and receiving coverage denials upon revelation of their HCS risk. These experiences extended to life, health, disability, and travel insurance. Some participants became attuned to “enacted” stigma when comparing their coverage to that of individuals without a genetic condition, such as non-HCS affected family members:

Other individuals attributed decreases in their insurance coverage after disclosing their HCS risk to genetic discrimination:

Participants also exhibited familial insurance concerns of “enacted” stigma, fearing that their personal negative experiences with obtaining coverage may extend to other relatives in the future. To cope with these concerns, some individuals took a proactive approach, such as obtaining life insurance policies on their young children before they were eligible for genetic testing:

Alternatively, some participants described their relatives choosing to forgo genetic testing entirely to prevent the possibility of having a positive test result noted in their medical records:

Participants reported concerns of “felt” stigmatization for taking leaves of absences from work. Participants recounted that their coworkers and employers had a limited understanding of the medical burdens of an HCS risk, such as screening appointments and recovery time from prophylactic surgeries. As such, coworkers and employers could make erroneous assumptions as to why an individual with HCS was frequently taking time off from work:

Another common concern was that the revelation of one’s HCS risk could impact access to professional opportunities via concerns of “enacted” stigma. Participants described fears of not being able to secure employment, being passed over for promotions, and facing wrongful termination or forced retirement. Participants also expressed opposition to receiving special privileges and being singled out as different from their coworkers. In summary, participants were concerned that the ability to fulfill the responsibilities of their job would be arbitrarily called into question once their employer learned of their HCS risk:

Several individuals described being hesitant to share their HCS risk with family, friends, and acquaintances due to a perceived risk of genetic discrimination, such as judgment from family or stigmatization from a social set. Specifically, participants noted that the burden of deciding whether to make their HCS risk known affects participation in conversations and relationship-building with others. Many individuals reported that they share their HCS risk on a need-only basis:

However, in adopting this mentality, participants also described feeling like they were engaging in a deceptive maneuver by hiding an important part of themselves. Some individuals described grappling with a mental conflict of whether to disclose their genetic diagnosis and risk a negative reaction from the receiving party or to keep the diagnosis hidden until explicitly prompted. Consequently, a few participants described this mental conflict between secrecy and disclosure to impede engagement in casual conversations:

In terms of experiences, several participants described facing “felt” stigmatization in romantic relationships from their partner or partner’s family upon disclosing their positive HCS status. Stigmatization could pose barriers at various points during a romantic relationship, from early attachment to family planning. For example, one individual described being upfront about their HCS risk during early encounters with a new partner (e.g., disclosing their genetic diagnosis on the first date); the participant attributed the termination of the relationship, in part, due to this upfront attitude:

Additionally, while some participants received acceptance and support from their partner, members of the partner’s family expressed “felt” stigma. This especially emerged in family planning discussions as participants reported being rebuked for the possibility of passing a cancer predisposition-associated gene onto their children. For instance, participants were accused of tainting an otherwise healthy genetic lineage:

While most participants expressed an appreciation for the intended protective effects of the GNDA, many also demonstrated gaps in understanding the specific provisions of the GNDA in terms of limited awareness, confusion, or misconceptions of its protections.

Most individuals regarded the GNDA as valuable legislation to prevent and mitigate incidences of genetic discrimination. Many participants appreciated that the GNDA prevents third parties from malicious obtention and use of personal genetic information, particularly highlighting that the GNDA regulates permissible lines of questioning by insurance companies:

Most participants demonstrated a basic knowledge of the GNDA’s existence and purpose as a legal defense against genetic discrimination. Those displaying a more nuanced knowledge of the GNDA were often of a healthcare background themselves or had close contact with the healthcare system. However, beyond this subset of participants, most interviewees demonstrated limited knowledge of specific provisions of the GNDA. Many individuals expressed confusion or harbored misconceptions around which service providers are bound by the GNDA, the process of obtaining explicit consent before disclosing genetic test results, and where exceptions to the GNDA may apply. For instance:

Limited knowledge of the GNDA’s specific protections prevents individuals from using the full extent of the law to protect themselves from incidences of discrimination. In the insurance context, participants described having their genetic status solicited through roundabout questioning around family or genetic testing history rather than directly being asked whether they had tested positive for a cancer predisposition-associated gene:

Participants’ confusion around what they were legally required to disclose contributed to an impaired capacity to seek recourse when faced with roundabout questioning. Thus, some participants discussed limited guidance for addressing genetic discrimination as they did not know the “implications” of disclosing their genetic status prior to experiencing discrimination nor avenues of recourse to escalate the matter after experiencing discrimination:

Overall, the tenor of conversations with participants around the GNDA’s provisions tended to be tentative and uncertain reflecting a limited understanding of one’s rights protected under the law and actionable next steps to address violations of these rights.

To our knowledge, our study is the first to investigate concerns and experiences of genetic discrimination in the Canadian HCS population while also exploring knowledge (or lack thereof) on the GNDA among this population. Our study provides insight into the pervasive and multifaceted nature of genetic discrimination even amidst the implementation of policy interventions, such as the GNDA. We found that concerns and experiences of genetic discrimination, representing both “felt” and “enacted” stigma, perpetuated across healthcare, insurance, employment, and family and social settings. Our results further show that participants valued the intent of the genetic nondiscrimination legislation, but demonstrated a paucity of awareness of the particular protections conferred by the GNDA. This lack of awareness hinders individuals’ ability to proactively whistleblow and/or retroactively seek recourse when facing genetic discrimination. Our results highlight a disconnection between the intended protective effects of genetic nondiscrimination legislation, and persistent concerns and experiences of genetic discrimination and stigma among individuals with hereditary conditions.

Our first finding of multifaceted concerns and experiences of genetic discrimination is consistent with findings in other hereditary disease groups [12‒14, 28‒30]. Our findings corroborate literature on genetic discrimination in healthcare, insurance, employment, and family and social settings, from difficulties in obtaining insurance coverage to relationship-building with others [12‒14, 28‒30]. Participants also highlighted important concepts, including secrecy, withdrawal and disclosure, which resonate with findings of other studies in genetic discrimination and stigma literature. For instance, a study on strategies to manage genetic discrimination used by individuals with the Huntington’s disease mutation reported that participants “kept low” and attempted to pass on as though they did not have a stigmatizing identity, such as deliberately keeping their genetic test results private [12, 31]. Another study on individuals with hereditary hemochromatosis found that participants often experienced social isolation upon disclosure of their genetic condition [13]. Furthermore, our study exposes nuances of concerns and experiences of genetic discrimination specifically in the HCS patient population. Despite HCS being one of the most prevalent hereditary conditions, many individuals outside the patient population possess limited knowledge of the condition’s unique care needs which may result in discriminatory comments or actions [1]. For example, individuals with HCS may face “felt” stigma from employers or coworkers for taking leaves of absence or reprimands from relatives for tainting the family’s genetic lineage. This lack of knowledge may even persist among healthcare providers, manifesting as offensive assumptions from providers that the individual did something to bring HCS upon themselves or judgment for engaging in genetic services. Thus, our findings highlight the multifaceted nature of genetic discrimination and demonstrate the need for future research into holistic interventions to address genetic discrimination as it may be encountered in various forms. Specifically, although many reported results involve “felt” stigma as opposed to “enacted” stigma, stigma theory posits that “felt” stigma usually precedes “enacted” stigma; thus, it is of great importance to recognize and address “felt” stigma before it escalates into behavioral manifestations as “enacted” stigma [11]. This is especially significant given that HCS risk is a discreditable disorder, wherein the lack of overt symptoms (without a cancer diagnosis) allows for the disorder to be hidden [32]. The association between stigma-related stress and psychological distress is mediated by social support; however, individuals with discreditable disorders often experience greater social isolation than individuals with visible stigmas [32].

Our second finding that participants possess limited knowledge of the GNDA’s protections is consistent with investigations of public awareness on genetic nondiscrimination legislation in other countries [20, 33‒35]. Worldwide, although there is a high perceived importance of genetic nondiscrimination legislation, many individuals possess an incomplete understanding of specific legislative provisions [17, 33, 34]. For instance, studies investigating public awareness of the Genetic Information Nondiscrimination Act in the USA indicate that participants misconceive protections against genetic discrimination in employment and insurance settings [33‒35]. Our results add to the literature by demonstrating that limited knowledge of legal protections hinders an individual’s ability to whistleblow and seek recourse when facing genetic discrimination. These results emphasize the need for future research exploring strategies to increase public awareness of both genetic nondiscrimination legislation and avenues for recourse to allow citizens to utilize the full extent of the law to protect themselves.

Our study illuminates the chasm between policy in terms of intended protections of genetic nondiscrimination legislation and practice in terms of persistent concerns and experiences of genetic discrimination among members of hereditary disease groups. Our study was conducted in Canada, which has the world’s most comprehensive genetic nondiscrimination law [18]. This is significant as our study demonstrates diverse manifestations of genetic discrimination. Our study reveals the existence of non-legislative settings, such as family and social settings, where the reach of policy is limited. Our findings highlight the need to explore practice changes in such settings, potentially using knowledge translation via allied health professionals (e.g., genetic counselors) and community support groups [36, 37]. These individuals and groups can disseminate strategies to address genetic discrimination in non-legislative settings, such as describing confidentiality measures to pre-empt genetic discrimination and exploring self-advocacy measures to confront genetic discrimination, for use by members of hereditary disease groups in mitigating concerns and experiences of genetic discrimination in their own lives [29, 36, 37]. Furthermore, these individuals and groups can also educate members of hereditary disease groups on limitations of genetic nondiscrimination legislation and the possible use of proxy information including pending genetic tests, prophylactic surgery history, and family history by third parties to extrapolate genetic status [36]. By encouraging awareness of roundabout questioning that may be used to solicit genetic status, members of hereditary disease groups will be better equipped to address genetic discrimination. Thus, our findings recognize that non-legislative settings and the use of proxy information by third parties limit the reach of genetic nondiscrimination policy, and highlight the exploration of knowledge translation practice changes to improve accessibility of resources to address genetic discrimination.

Our study has limitations. First, findings from qualitative studies are not meant to be generalizable, meaning that we may over/under ascertain the full-range of impacts of genetic discrimination among individuals with HCS. However, our qualitative approach allowed us to understand individual perspectives leading to the identification of unexpected areas of research; the open-endedness of our qualitative interviews allowed participants to bring attention to issues such as genetic discrimination that may have been missed if using an alternative quantitative design. To that end, as we did not explicitly ask interviewees questions about genetic discrimination, it is possible that the full-range of impacts of genetic discrimination across participants may have been missed. Our study was not designed to explore the temporality of participant experiences in terms of whether a certain experience pertaining to genetic discrimination occurred before or after the passage of the GNDA. However, given that our study highlights an overall limited awareness of the GNDA’s protections, it is likely that many participants would not possess the knowledge to assert their rights and/or pursue legal recourse even if the experience in question did occur after the GNDA came into effect. In addition, it is possible that selection bias was present in our study wherein genetic nondiscrimination legislation such as the GNDA has been valuable to some individuals with HCS in combating genetic discrimination and these individuals were less likely to participate or their perspectives were otherwise missed in our study. Thus, there is a need for future research into this significant and pervasive issue. Moreover, given the intersectional nature of discrimination, it is difficult to solely attribute any “felt” or “enacted” stigma described by participants to genetic discrimination, especially in participants with a cancer history. This limitation also corresponds to the previously noted inability of the study design to capture the temporality of alleged stigmatizing or discriminatory incidents in relation to genetic testing history, cancer history, and the passage of the GNDA. However, approximately half of the quotes in the results presented come from participants without a cancer history, thereby increasing the likelihood that their genetic risk was the catalyst for discrimination reported by these individuals. For participants with a cancer history, this limitation is itself illuminatory in demonstrating how inextricably linked HCS and the cancer experience are in the context of discrimination. Finally, our participants were predominantly female, of White/European descent, educated, and had children. In part, our sample was limited by the biological nature of syndromes included in this study; HBOC is diagnosed more often in women of White/European descent [38]. Nevertheless, these characteristics may limit transferability of our findings to individuals with characteristics that are different from our participants, and thus, more research with larger and diverse populations is needed.

Our study also had several strengths, such as the geographic diversity of participants and multidimensional exploration of genetic discrimination across multiple HCS subtypes. Given the GNDA is federal legislation, it is valuable to capture perspectives from across the nation as we were able to accomplish through our pan-Canada sampling in ON, BC, and NL. Furthermore, as various subtypes are encompassed within HCS, each with unique care needs and experiences, it is important to explore nuances in how genetic discrimination may manifest across these subtypes. Therefore, despite the aforementioned limitations, our study provides valuable and novel insights into the multifaceted nature of genetic discrimination and lack of knowledge of legal protections among the HCS population. Our findings highlight the various settings in which HCS patients may encounter genetic discrimination, and their limited knowledge around the GNDA. Future studies with more diverse cohorts from patient populations beyond HCS can provide additional insights into genetic discrimination and public awareness around genetic nondiscrimination legislation. This can help develop policy and public education priorities to address concerns and experiences of genetic discrimination faced by HCS patients, and families affected by other hereditary conditions.

The authors are grateful to the study participants.

This study was performed in line with the principles of the Declaration of Helsinki. The Research Ethics Boards at Clinical Trials Ontario (REB#1655), BC Cancer (REB#H21-03579), and Human Research Ethics Authority of NL (REB#2022.014) approved this study. Before inclusion, written and verbal informed consent was obtained from each participant, as approved by all REBs.

The authors have no relevant financial or non-financial interests to disclose.

This study was supported by a grant from the Canadian Institutes of Health Research (CIHR-178532). Y.B. holds the Canada Research Chair in Genomics Health Services and Policy.

These authors jointly supervised this work: Yvonne Bombard, Holly Etchegary, Kasmintan Schrader. Conception and design: Y.B., K.S., H.E., J.S., R.G., Data collection and analysis: Y.B., R.G., J.S., C.B., E.R., M.C., S.R., B.S., Writing – original draft: R.G., Y.B., Writing – critical revisions and final approval: R.G., J.S., C.B., E.R., M.C., S.R., B.S., V.A., M.A., D.B., L.D., A.E., T.G., J.G., C.M., J.P., C.P., P.P., C.R., Se.S., So.S., T.T., A.T., K.S., H.E., Y.B.

Derrick Bishop, Julee Pauling, Claudia Pavao, Catriona Remocker, Teresa Tiano, and Angelina Tilley are patient partners.Kasmintan Schrader, Holly Etchegary, and Yvonne Bombard are co-senior authors.

The data that support the findings of this study are not publicly available due to their containing information that could compromise the privacy of research participants, but are available from the corresponding author Y.B. upon reasonable request.