Autism spectrum disorders (autism) are a group of lifelong neurodevelopmental conditions that significantly impact social, communicative, and behavioral functioning. Many autistic children receive their ongoing health care in the community from family physicians, nurse practitioners, or general pediatricians and only access a subspecialist (e.g. developmental pediatrician, child and adolescent psychiatrist) if more specialized assessment or care is required (Ip et al., 2019). Autistic children encounter numerous barriers when accessing healthcare, including a lack of providers with training and experience in assessing medical conditions in this population. This results in autistic children being less likely than children with other special healthcare needs to obtain needed specialty care (Homer et al., 2008; Kogan et al., 2008; Krauss et al., 2003). Autistic children with developmental disabilities are also at increased risk of experiencing unmet healthcare and dental needs (Kogan et al., 2008; Lai et al., 2012; Mayer et al., 2004; Silver & Stein, 2001; Strickland et al., 2004). Equity-deserving populations, including racial and ethnic minorities, those with low socioeconomic status, and rural residents, face even greater challenges in accessing timely and appropriate healthcare, leading to poorer health outcomes (Newacheck et al., 2002; Skinner & Slifkin, 2007; US Department of Health and Human Services, n.d.)
Interventions that improve access to care for autistic children and youth are urgently needed with accompanying evaluation to ensure they are achieving their aims. Studies of individual care programs lack the ability to compare effectiveness and systems outcomes, hampering both knowledge acquisition and meaningful improvements in patient outcomes. Learning health networks (LHNs) offer a promising alternative by enhancing the quality and efficiency of healthcare delivery through the integration of clinical and research data, enabling continuous learning and improvement (Enticott et al., 2021).
An LHN is a system of interconnected centers that collectively work towards defined goals by leveraging shared data and knowledge (Menear et al., 2019). The Autism Care Network (ACNet) is one such network composed of more than 20 clinics across the United States and Canada, dedicated to developing the most effective approach to care for autistic children and adolescents (Coury et al., 2020). ACNet developed from the previous Autism Speaks Autism Treatment Network; this transition from a research network to a LHN fostered necessary infrastructure to improve data collection and analysis, develop interventions, and translate information into practice, thereby enhancing their ability to achieve the network goals of improving pediatric autism care (Murray et al., 2019). The ACNet aims to bridge clinical care with quality improvement (QI) science, enabling centers to implement research findings, establish reliable processes, and implement data-driven changes to improve outcomes for all autistic patients. By providing the necessary infrastructure, methods, and tools, the ACNet facilitates research and QI activities among associated centers (Broder-Fingert et al., 2013; Coury, 2006; Mazurek et al., 2014; Zuckerman et al., 2013).
Given that many autistic children receive their ongoing medical care in community settings rather than tertiary care centers, it is imperative to extend the ACNet to community clinicians. This extension must consider the unique needs, strengths, goals, and interest of community clinicians in joining an LHN. As such, the primary objective of this study was to understand the current data collection practices, learning needs, clinic capacity, identified areas for improvement, and perspectives on participating in an LHN.
Methods
Research Design
This qualitative study adopts an interpretative phenomenological analysis (IPA) within a social constructivist paradigm. This approach emphasizes that knowledge is constructed within the environment of interaction, where meaning evolves through engagement and interpretation (Flood, 2010). In this study, knowledge is co-constructed between researcher and participant, with the research team actively contributing to the generation of knowledge (Crotty, 2020). This facilitates in-depth analysis of complex issues while recognizing the influence of context.
Our research team includes autism experts leading ongoing training programs for community clinicians, research staff, and trainees within the ACNet. Semi-structured interviews were conducted using a guide constructed by ACNet investigators with assistance from two community-based physicians (Appendix 1). This guide explored topics such as current quality of care, integration of tools in practice, barriers to practice change, and perceived benefits and drawbacks of participating in an LHN. Interviews were conducted by authors JK for the Ontario site, SL and NP for the Alberta site, and ABC and WC for the Missouri site. Authors JK and CB led the analysis of data across three sites.
Ethical Approval
The following research was approved by review boards at Holland Bloorview Kids Rehabilitation Hospital (REB #0284), the University of Missouri-Columbia (IRB #2005420), and the University of Alberta (REB #Pro00075996). Participants gave informed written consent before participating in this study.
Participants and Recruitment
Participants were sampled from three locations: Ontario, Alberta, and Missouri. Potential participants were recruited from the Holland Bloorview Kids Rehabilitation mailing list for Extension for Community Healthcare Outcomes (ECHO) Autism, an educational initiative aiming to spread specialist knowledge on autism care to community practitioners (Mazurek et al., 2017). Of note, ECHO is one part of an LHN that is focused on connecting community providers with specialist care providers and sharing knowledge (Fig. 1). Participants recruited from the University of Missouri were community-based autism diagnosticians who participate in the ECHO Autism Communities Primary Care STAT program. Participants from Alberta were recruited from the Glenrose Rehabilitation Hospital community pediatrician ASD assessment program.
Fig. 1
Relationship between ECHO and the autism care network
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Participants were included if they were physicians with a practice based within the site’s province/state. Across the three sites, 29 practitioners completed interviews and provided demographic information (Table 1). Participants were primarily pediatricians (n = 28), female (n = 25), and had a median of 11 years in practice.
Table 1
Participant characteristics
Ontario | Alberta | Missouri | Total | |
|---|---|---|---|---|
Gender | Women: n = 13 | Women: n = 7 Men: n = 3 | Women: n = 5 Men: n = 1 | Women: n = 25 Men: n = 4 |
Years in practice | Median = 15 (range 1–30) | Median = 11 (range 2–25) | Median = 11 (range 4.5–14) | Median = 11 (Range 1–30) |
Type of physician | Pediatrician: n = 12 Family doctor: n = 1 | Pediatrician: n = 10 | Pediatrician: n = 6 | Pediatrician: n = 28 Family doctor: n = 1 |
Average wait time to appointment for new developmental consult (weeks) | Median = 12 (range 1–52) | Median = 8 (range 3–18) | Median = 6.5 (range 2–16) | Median = 8 (range 1–52) |
Average wait time to communicate diagnosis to family after assessment (weeks) | Median = 2 (range 0–10) | Median = 2.5 (range 1–16) | Median = 1 (range 0–12) | Median = 2 (range 0–16) |
Data Collection
Interviews, conducted from November 2022 to March 2023, took place via Zoom with at least one member of the local research team (e.g., research student and/or coordinator). Participants’ reflections were at times further prompted through clarification, requests for examples and descriptions, and listening techniques (Flood, 2010). To promote consistency, all participants were asked the same interview questions and interviewers had access to the same additional prompting questions to encourage elaboration. Interviews were audio and video recorded using Zoom. Recordings were stored on secure servers at each interview site and deleted after transcription. Interviews were transcribed and de-identified by research team members at the local site and securely shared with Holland Bloorview for analysis.
Data Analysis
Quantitative data obtained from the initial pre-interview surveys were analyzed using descriptive statistics. Two members of the research team at Holland Bloorview (authors JK and CB) independently read and inductively coded the first four interviews, met to review their codes, and developed the coding guide. The first ten interviews, including the initial four, were again coded independently by each team member. They had regular meetings throughout this process to review the ongoing analysis, discuss agreement, and expand the guide. Coder disagreement prompted review of the interview transcription, referring to the coding guide definitions, and discussing applicability of the codes and/or the need to expand or adjust the coding guide. There was a plan to review with a third research team member (author MP) if disagreement persisted; however, this was not needed. After the final coding guide had been established, the remaining interviews were each coded by either JK or CB. In the event one of the coders added or changed a code after this point, the coders met and subsequently went back to the previously coded interviews to scan for occurrences of this code. The final coding guide is included in Appendix 2.
Once this initial analysis was completed, the codes were analyzed by the research team members at Holland Bloorview, who identified themes in the data. These themes were presented to the larger study team and ACNet leadership and subsequent feedback was incorporated into the final analysis.
Results
Study Participants
Twenty-nine physicians participated in this study. Participant characteristics are described in Table 1. There was a female predominance in participants, however this is likely due to the higher proportion of females in the field of general pediatrics (Canadian Medical Association, 2019). Representative quotations are presented for themes and sub-themes in Table 2.
Table 2
Representative quotations
Themes | Representative Quotations |
|---|---|
Improving Data Collection Practices | |
Interest in collecting feedback | I think it would be beneficial to get feedback about you know everything […] how’s their experience going in clinic, with our staff, with me, with the services that they’ve got […], what sorts of things would they like to see improved in in their child’s care. And then you could try to utilize that to make positive changes if you’re able” – A2 |
Standardization minimizes gaps in care | “There are a lot of moving parts, and even when you do this work a lot, it’s easy to miss one little piece with a family and having something standardized that you go through every time captures and makes sure that we’re giving equitable care to everybody, right? And you know you’re not missing an important funding piece or an important therapy piece” – O4 “But if some sort of framework existed, it would be phenomenal because then you’re like, okay, I know I’m covering everything I need to be covering, I’m thinking about the things I need to be thinking about here” – O8 |
Standardization produces objective information | “This is my expertise, and I have lots of, lots of practice. But still, I think using tools, like questionnaires, supports your suspicion or your diagnosis. It is black and white and you can show it to parents” – A10 |
Lack of knowledge of comprehensive tool | “If there is a standard questionnaire, which I’m not aware of […], yes, I would definitely be interested in it.” – O7 “Because I don’t know if there is any screen tools… Is there like a special one for autistic children? I don’t know about that.” – A7 “I have wondered if there was a specific autism related tool that could be used for [data collection]. And I’ve personally never come across anything that was developed specifically for that purpose” – M4 |
Maintaining family-centered goal setting | “I had a mom one time fill out [a questionnaire] saying, “He’s just not doing any of this.” And she almost looked defeated handing it back […] What I would like to see would be something […] goal oriented, like ‘What would you like? What would you like to work on for your child?’” – M2 |
Barriers to obtaining information | “What I would like to before seeing patient, is to have, like a real checklist and a questionnaire from the day care, from the families, and everything before seeing them. I try to have this, but very often they forget the questionnaire.” – O9 |
Increasing Provider Confidence and Competence | |
Changes in the autism care landscape – Ontario | “The other tricky part is that you know the way the [local funding service] is run, and how it’s ever changing. If there was a way that the clinicians learned, quick little bulletins about what’s new or what’s changing, or how to help your patients enroll, that would be super helpful. Because unless you specifically go looking for it, you would never know how [local funding service] works and when it’s changed.” – O5 |
Physician gap of knowledge in older patients | “Where I feel less comfortable, and I have more and more demand, is older kids” – O9 “I actually really struggle with [transition to] adulthood […] There’s a huge either a gap of resources or maybe a gap of my knowledge, and other professional knowledge, on how we can help them” – A5 “Sometimes we need more help figuring out the true psychiatric diagnosis […] and I found that that’s more of a problem with older kids that don’t have a diagnosis that might be autistic but have behavior issues and things like that” – M3 |
Support from tertiary centres: educational initiatives | “I find that that’s the biggest thing is that […] sometimes it’s really tough when you’re like, ‘Oh, I don’t know what to do with this next […]. [Having] that route to just be able to ask a question or clarify something is, or just kind of troubleshoot, would be the biggest help. I think that would also save some of the referrals” – O8 “Once we’re given a little bit of guidance about how to approach different things that we’re troubled with or stumbling on at one point, then we learn from that. And then we’ll try it next time and get more confidence” – A8 |
Appreciation of ECHO | “I feel like over the last, probably ever since the Echo Sessions started, I have gained a lot – like a lot – of knowledge and always felt really, really well supported.” – O11 |
Navigating Administrative Challenges in the Community | |
Lack of time as a barrier | “I should also mention other barriers providing care would be the fact that I have limited time myself. […] I’m only one person, and I feel like I’m having to do the work of multiple, multiple people.” – M2 |
Lack of available allied health | “We have a hospital social worker for inpatient, but we don’t have a clinic social worker. So, it’s hard to keep up on what services are available, who does what, where we can find certain [things], who else does diagnose autism in the area.” – M3 “If I knew I had access to a social worker or somebody that was available to patients [I would be willing to participate in an LHN]. I am a solo provider, and so I do a lot of troubleshooting over phones. It’s a lot of energy and time, and there’s no financial payment for any of this, but you can’t not do it.” – O6 |
Lack of compensation | “I would say developmental care and care for autistic people in general is, or more specifically, is something that that that takes time. And it may be more challenging, particularly given how funding […] works for community providers to have the time that’s necessary to provide a high standard of care” – O2 “I spend like usually several hours coming up with and writing my report after doing one of the assessments. It’s often work that we’re not sort of getting paid for either, doing that written assessment there.” – A2 “Information has to be looked at and then applied, or, you know, assessed, or however you want to look at it. That takes money and that takes time” – M1 |
Administrative burden | “I think the issue often with [implementing standardized tools] is just the manpower. Like how do we get it out to families ahead of time? How do we get it back? And in the community, there’s a lack of support professionals, right? So, we’re often doing it myself and my [administrative staff] would be the ones involved in doing that and just finding the time and the ability to kind of get that happening is the tricky part” – O4 |
Conditional willingness to participate in LHN | “In theory I would love to [participate]. But right now, again I am so overwhelmed with work, like my regular appointments, plus all the autism stuff, plus trying to get you know my presentations is done, and my documentation and all that. So, I don’t know that I really could take on more at this point” – M3 |
Breaking Down Silos: Enhancing Interdisciplinary Collaboration | |
Lack of centralized information system | “It would be nice if there was like a better way to sort of have like that free flow of communication [from allied health and schools] […] It’s easier if it’s all within the health care system, because then it’s all sort of in a central place” – A2 |
Physician responsibility to collect information | “It’s not that often that I get to reach out to teachers and talk to them […] We don’t often make time, so you do rely on the parents’ feedback. I very rarely get written reports.” – A5 |
Siloed services | “I think the communication really kind of falls off, because it is so fragmented […], you could go to this school or this program, or maybe you got [government program] mandated OT, or maybe you found your own OT, and it’s not like one place. If they were all at the [tertiary hospital], and they were all using the team at the [tertiary hospital], then you could very easily send over your reports” – A3 |
Reliance on family members as care navigators | “We’ll often make parents middlemen, right? I want to hear about how therapies are going […] and we’re using them to communicate, and that’s not fair.” – M1 “I think because there’s many different providers involved a lot of times, like many different therapists, so you often never get feedback from the therapists. So, you’re just getting information from the parents, and sometimes they know, sometimes they don’t know” – O12 |
Lack of communication impacts provision of care | “So, unless the family comes back in, we don’t know sort of what the outcome was [of their allied health visits]. That becomes very fragmented and sometimes difficult, because there might have been a strategy that was helpful. And now the family is in crisis again, and we really don’t know a lot of feedback about what was useful” – O6 |
Standardization as a solution | “Something like an immunization card where each service provider could write the service that they provided and gave like maybe 3 lines on what it was and what they observed [would be helpful]. And if parents, all they had to do was have this card, and go from provided to provider, and then come back to their primary care provider or even their teacher, then everybody would know what’s going on without the families having to be the bearer of all that news.” – O11 |
Service navigators as a solution | “And so I think that’s like my biggest thing: something has to either get streamlined or a family gets attached to someone who can help to navigate” – O8 |
System and Societal Barriers to Achieving Best Practices | |
Timeliness of care | “I think it’s hard to know the frustration, the difficulty, of being on multiple waitlists. […] Our families are waiting for a diagnosis. They get a diagnosis and then they wait on the other end is even longer and that’s frustrating for me to accept but it’s even more frustrating for those who are waiting.” – O3 |
Financial barriers to access services | “There’s one pathway for the patients that can pay, and that pathway is much shorter, but still long. And then there’s another pathway for the patients that can’t pay, and that pathway is even longer.” – O1 “I’m diagnosing pretty fast, but kids are not getting the help they need for years. So, it doesn’t make any sense diagnosing when they can’t really get the help, because funding is so delayed for those families that don’t have the money to pay.” – O10 “Right now, our system isn’t going to take one of the health care plans that is offered by Medicaid, and so, I’ve got all of these autistic families that are kind of trying to get that switched up. And the one plan that we won’t take is the one that provides care to all the kids in foster care, or formerly in foster care.” – M4 |
Family difficulty navigating autism care | “There’s language barriers, educational barriers, and I really think the capacity of parents as far as their workload and the demands of their day to day. I find checklists are helpful, but sometimes overwhelming for families to get back […] These families are burdened with a lot of paperwork, right? And so one more thing on top of all of the things can be that one thing that kind of breaks the camels back.” – O4 |
Barriers to care focused primarily after diagnosis | “We seem to be very diagnosis driven, and then we struggle to know how to serve it” – O6 “I think that was my biggest challenge -- I could say your child has autism, but where do you go from here?” – A4 “But we need to make sure that we have the resources even after the diagnosis, to be able to continue to help these families. I don’t want to give a diagnosis, and then say you’re done; that’s one of the biggest complaints I hear from families” – M2 |
Importance of equity in autism care | “[My autistic patients] need the normal standard of care, which means that they need a full set of vital signs, and they need appropriate screenings, and all the same health care that I would expect any child of the same age to receive. But that also means that we need to provide certain accommodations to make that as easy as possible for that particular family” - M4 |
Themes
We identified five overarching themes from the interviews: ‘Improving Data Collection Practices’, ‘Increasing Provider Confidence and Competence’, ‘Navigating Administrative Challenges in the Community’, ‘Breaking Down Silos: Enhancing Interdisciplinary Collaboration’, and ‘System and Societal Barriers to Achieving Best Practices’.
Improving Data Collection Practices
Participants across all sites commented on the data they would like to consistently collect from patients, most commonly mentioning developmental progress, diagnostically relevant behaviours, general health information (e.g. sleeping and eating habits), reports from schools, and progress notes from allied health clinicians (e.g. speech language pathologists or behavioural therapists). Participants also wanted more routine feedback from families, including their perceptions of the quality of care, gaps in services, and satisfaction with communication.
Many participants (n = 18) across sites expressed a keen interest in increasing the use of standardized data collection methods. This included participants who were actively trying to incorporate standardized tools into their practice, those who utilize portions of existing tools, and those who exclusively used non-standardized methods (e.g. loosely structured patient interviews or bespoke templates). Generally, participants felt that using standardized tools to guide clinical encounters would ensure aspects of care are not missed, minimizing gaps in care. Many participants (n = 22) believed that increased standardization could enhance efficiency of visits if they were able to use tools to collect information from families beforehand. Increased standardization also allows for the generation of measurable information on diagnosis and progress for the benefit of both clinicians and families. Additionally, information collected from standardized measures can be used for higher-level analysis of the impact of treatments and services, including that of physicians’ own care. Participants described their ideal data collection tool as one that is easy-to-use, efficient, accessible, capable of integrating information from external sources such as schools or allied health providers, and flexible enough to accommodate the wide variability observed among autistic patients. Across all three sites, providers who discussed a desire for such an ideal tool were either unaware of or felt that no existing tool fully met their needs.
In addition to the emphasis on standardization, providers across sites emphasized the importance of unstructured conversation to identify patient and family goals. Goal setting was frequently discussed, highlighting the need to prioritize patient individuality and family-centered care through conversation. Additionally, participants at all sites provided reasons for their lack of standardized information collection, often invoking family barriers (e.g. caregiver time, not understanding of the importance of the questions, language or literacy barriers).
Increasing Provider Confidence and Competence
Participants generally highlighted that best practice care is defined by staying up to date on guidelines and community resources. Several (n = 15) expressed that this can be particularly challenging as a community clinician due to the ever-changing landscape of autism care. Ontario participants in particular highlighted specific difficulties navigating financial resources and services, hampering their ability to support families (n = 8/13). Participants from all sites commented on other challenging areas of practice, including diagnosis and management of older patients and complex patients with co-occurring physical, mental health, and neurodevelopmental diagnoses.
Participants shared their ideas and experiences in increasing their confidence and competence. Multiple participants across sites (n = 21) emphasized the role that tertiary centres can play through providing educational initiatives and more accessible consultation with experts. ECHO Autism was mentioned by several participants as an example of a helpful support from a diagnostic hub.
Navigating Administrative Challenges in the Community
Participants frequently highlighted the administrative challenges they face as community physicians, including lack of time, resources, and suboptimal administrative support. The overwhelming majority of participants from all sites (n = 27) expressed concerns about the limited time available for autism assessments and associated tasks, which hindered their ability to provide comprehensive care.
Participants emphasized that accessing resources in the community posed significant challenges for patients and families in many regions, particularly due to a scarcity of available services and difficulty navigating the resource landscape. This challenge is exacerbated by a lack of available allied health professionals, such as social workers, to aid in locating resources. The lack of administrative assistants or supporting allied health staff further exacerbated the time constraints faced by community physicians as their roles became increasingly stretched. Nine participants across sites commented that time constraints are related to the absence of financial compensation for the necessary activities not accounted for in a patient’s appointment time. Tasks such as gathering information from allied health providers and schools, contacting patients and families, and searching for up-to-date resources are often completed during the physicians’ own unpaid time. Participants also felt that the absence of support staff to assist with these tasks was a specific barrier they faced in the community. Participants generally identified the lack of supporting resources as a barrier to standardized data collection. While participants expressed interest in participating in an LHN, they expressed concerns about additional administrative strain, which made their willingness to participate conditional. Several conditions were identified that would make participants more likely to engage in an LHN, including minimal time commitment, low administrative workload, providing financial compensation, and the provision of allied health or administrative support.
Breaking Down Silos: Enhancing Interdisciplinary Collaboration
Multidisciplinary teams were frequently mentioned by participants, particularly in Alberta, as a core component of best practice care. The lack of a centralized system that enables easy access to information from allied health and schools was a recurring concern among participants at all sites. Thirteen participants felt that this contributed to the administrative stress in the community, as they were responsible for actively seeking out reports and updates from allied health/schools and synthesizing that information. Moreover, some participants shared their experiences of the community context being even more siloed than tertiary care centres, exacerbating the lack of communication.
Participants from all regions further elaborated on the consequences of limited communication between different aspects of the healthcare system, including that limited communication forces families to become the liaison between providers regarding their child’s care. Ontario participants frequently highlighted the importance of the family and elaborated to explain how language and literacy barriers can exacerbate these challenges. In addition to increasing caregiver strain, this reliance on families can be complicated by the family member’s understanding of autism, lack of time to track their child’s behaviours or progress, and difficulties in navigating the autism care landscape. Even when participants received information, they often felt ill-equipped to fully comprehend the care plan and sufficiently answer families’ questions. Overall, participants expressed concerns that the lack of communication between services ultimately compromised their quality of care.
Participants also shared their ideas to break down these silos and foster better interdisciplinary collaboration, including increasing written communication and implementing standardized forms for data collection, organizing family meetings involving all professionals associated with a child’s care, and providing families with systems navigators.
System and Societal Barriers to Achieving Best Practices
While the above themes explored various barriers in systems of care, this theme highlights the relationship between bigger picture systems-level issues and perceived family and physician barriers.
Many participants (n = 24) highlighted that timeliness of care, including timely access to diagnosis and the necessary resources and services, was a key component of best practice care that is often not achieved. Although this was mentioned by many participants across sites, nearly all participants in Ontario highlighted this as the largest barrier to best practice (n = 11/13). Timeliness of care was often mentioned in tandem with the financial barriers with accessing services after a child received a diagnosis. Challenges navigating financial barriers in the American healthcare system were also expressed by multiple participants from the Missouri site. All sites highlighted how the government’s understanding, or lack thereof, of the significant costs associated with accessing appropriate services and the complexity of the funding process adversely affects families. The complexity of the autism care landscape ultimately causes more stress for families and thus was seen as a limiting factor in care provision and implementation of standardized tools. Overall, participants across sites commented on the need for accessible care at every stage of the care process. Multiple participants from all regions commented on how the primary issue they face is not accessing a diagnosis; rather, it is the inability to connect families with the resources they need after they receive a diagnosis.
Participants generally also discussed the connection between societal views of autism and systemic barriers, highlighting how these factors may impact how families understand autism. The importance of a societal acceptance of autistic patients was emphasized, particularly in how that relates to equitable treatment. The necessity of equitable treatment was emphasized significantly by participants from Alberta and Missouri.
Discussion
This study is the first to capture physicians’ perspectives on autism care in the community and how this influences their potential engagement with LHNs. Our findings highlight that the five key themes of ‘Improving Data Collection Practice’, ‘Increasing Provider Confidence and Competence’, ‘Navigating Administrative Challenges in the Community’, ‘Breaking Down Silos: Enhancing Interdisciplinary Collaboration’, and ‘System and Societal Barriers to Achieving Best Practices’ are the key issues that participating community clinicians currently face in Canadian and US sites. These findings are supported by existing literature on the challenges to providing community autism care, including insufficient time, confidence, access to autism specialists, administrative support, reimbursement, and care coordination (Antonelli et al., 2008; Mazurek et al., 2017, 2020). These barriers persist across stages of care from diagnosis to ongoing management (Penner et al., 2017).
The themes identified in our study were consistent across the three sites; however, nuanced differences between sites were identified. Ontarian providers more frequently underscored the pivotal role of the family, emphasizing the impact of a family’s motivation in completing measures and following up with services. They also noted specific obstacles to family engagement, including language and literacy barriers. In Alberta and Missouri, practitioners placed greater emphasis on equitable treatment of autistic patients, mentioning comprehensive care should include elements routinely received by neurotypical children. Participants in Alberta also mentioned the importance of multidisciplinary teams more often. In Missouri, patient individuality and active family participation in decision-making processes were emphasized. These distinctions may reflect the variations in the healthcare and cultural landscape across North America.
Our study also provides unique insight into how community autism care can be improved through community expansion of LHNs, such as the ACNet. LHNs emphasize standardization as a means to minimize unnecessary care variation and maximize efficiency (Richesson, 2021); the desire for standardized information collection was clearly expressed by participants as they discussed dissatisfaction with current practices and difficulty consolidating information from multiple clinicians. The resulting enhanced efficiency may alleviate the time burden involved with information tracking and inter-professional communication. It is important to note that all LHNs require ongoing commitment to standardization and pooling of information to ensure information remains relevant and up-to-date (Richesson, 2021) and this commitment would need to be understood by clinicians. Another core tenet of LHNs is to provide easy-to-access resources so that providers can find the information they need, when they need it (James M Anderson Center for Health Systems Excellence, n.d.). Lastly, LHNs can contribute significantly to bridging the quality and accessibility gaps in care through ongoing examination of care practices and implementation of practical solutions (Lannon & Peterson, 2013). As such, LHNs can help to identify discrepancies in access to care, which were a concern for many participants. Due to the interconnected nature of these themes, improvement in one aspect of autism care can directly translate into improvement in other sectors.
The implications of this study extend beyond autism care and into broader improvements in community healthcare. Our search of the literature revealed one published example of pediatric LHN community expansion. PEDSNet is comprised of eight academic pediatric health centers with additional regional partners spanning 22 states and generates data to enhance outcomes across various pediatric health conditions (Forrest et al., 2014). Several of the key issues highlighted by participants in our study are issues prevalent in community healthcare in other fields, therefore demonstrating how LHNs, such as ACNet and PEDSNet, can be utilized to address barriers in a wide variety of contexts. A core principle of LHNs is fostering collaboration through transparency of information, communication policies, and data sharing. This can play a key role in increasing communication across disciplines and locations, which is particularly relevant in the community setting (Britto et al., 2018). The ability to bridge gaps in knowledge between tertiary care centers and community clinicians allows for more open communication of up-to-date clinical evidence, best practices, and resources that might not be readily available in their local settings. This concept of information sharing has been demonstrated with initiatives such as ECHO Autism, in which primary care clinicians engage in biweekly sessions with an interdisciplinary expert panel to increase screening, identification, diagnosis, and management of autistic patients (Mazurek et al., 2017, 2019). Similar programs have also demonstrated efficacy and benefit for patients with a diversity of conditions, such as chronic liver disease, pain management, and diabetes (Colleran et al., 2012; Glass et al., 2017; Katzman et al., 2014). By facilitating this exchange of information, data, and expertise, LHNs enable community practitioners to make more informed clinical decisions, optimize care processes, and enhance patient outcomes.
Limitations
The participation of community physicians with interest in autism limits the transferability of our findings to the broader group of practitioners in the community as our participants likely had more interest in an autism LHN and increased willingness to participate. Despite including multiple sites in this study, specific regional contexts and healthcare structures might introduce nuances that are not represented in this study. Despite these factors, the overarching themes identified here provide a foundation for addressing obstacles in autism care delivery that resonate beyond the specific sites studied, thus offering valuable insights for enhancing autism care on a broader scale.
Conclusion
Community physicians play an essential role in the care of autistic children and adolescents. LHNs have potential to optimize community-based care; in order for this to occur, the needs of community clinicians must be acknowledged and addressed. The five themes identified by participants when discussing barriers in current practices and potential engagement in LHNs were: (1) Navigating Administrative Burden; (2) Improving Data Collection Practices; (3) Increasing Provider Confidence and Competence; (4) Breaking Down Silos; and (5) System and Societal Barriers to Achieving Best Practices. LHNs offer solutions to the issues identified within these themes and have the potential to improve many aspects of autism care in the community.
Acknowledgements
Sandy Litman assisted in conducting interviews at the Alberta site. This Network activity is/was supported by Autism Speaks and conducted through the Autism Speaks Autism Care Network. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by Autism Speaks.
Declarations
Conflict of Interest
The authors have no interests to declare that are relevant to the content of this article.
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