Understanding Barriers To Needed Access to HCP, Specialist Care

Published May 25th, 2021 | 5 Minute Read

People living with chronic health conditions know that finding a healthcare provider (HCP) that works for them – who thoroughly understands their condition and their specific situation, listens to them and works with them to develop an effective treatment plan – can go a long way toward gaining control of their patient journey. For many conditions, specialists trained to understand various symptoms, triggers and treatment approaches often play an essential role.

However, the reality is that people, for a number of reasons, don’t always have access to the HCPs most attuned to their needs, which can pose a significant hurdle throughout their health journey. For example, receiving a diagnosis might take months, years or even decades if patients don’t have access to individuals who thoroughly understand their condition. The inability to see a relevant specialist could lead to countless condition management concerns, including a worsening of unaddressed symptoms, a lack of awareness of appropriate treatments and an inability to refill needed prescriptions. 

Understanding not just the factors behind lack of HCP access, but also the significant physical and emotional impact it can have, can create opportunities for the healthcare industry to develop solutions that potentially bridge the access gaps that currently exist.

Although most people living with chronic conditions rely on specialists to help them manage and treat their conditions, the truth is that accessing these specialists might be difficult for some. Findings across Health Union’s large-scale, syndicated, condition-specific In America surveys – conducted regularly for all of the company’s online health communities – show that some people rely heavily on non-specialists, such as primary care providers (PCP), or those not specifically trained in their condition. For example:

  • More than half of COPD In America 2020 respondents most often see a pulmonologist or COPD specialist for their condition, but 36% most often see a PCP.
  • 37% of Hidradenitis Suppurativa In America 2020 respondents most often see a dermatologist for their condition, while 27% most often see a PCP; meanwhile, 28% don’t see any HCPs for their hidradenitis suppurativa.
  • Nearly two-thirds of Macular Degeneration In America 2020 respondents most often see a retina specialist, while 31% most often see a general ophthalmologist or optometrist.

Spotlighting these findings, along with perspectives from individuals engaging with these communities, can illuminate some of the factors contributing to – depending on the condition and individual situations – low access to specialists who can provide needed care, as well as the physical, emotional and financial implications that follow.

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Dealing with Distance, Logistical Challenges

For some, finding a relevant specialist can be difficult due to where they live, whether it’s a rural area or a significant distance from any large medical or research facilities. Depending on how specialized or prevalent the condition is, people with chronic conditions might have to invest significant time and money – and leverage various forms of transportation – to see a specialist, if they choose to do so.

For example, of Myasthenia Gravis In America 2021 respondents who have never seen an MG specialist, one-third said there isn’t one in their area; of those who currently see one, 41% need to travel more than an hour. Three in 10 Macular Degeneration In America 2020 respondents said they travel at least 30 miles each way to see a retina specialist, while 6% travel more than 100 miles each way.

Some individuals are willing or have the resources to travel long distances to see the closest – or, in some cases, preferred – specialist. To this end, one ProstateCancer.net participant said he traveled 85 miles each way because “I like the urologist there better than in my immediate area,” while another said he flies “1,500 miles once a month to see my doctor.”

Some even choose to relocate, at least partially to be closer to the medical care they need. The reality, though, is that traveling or relocating is not always feasible, for a number of reasons, which can compound both the physical and emotional impact of living with a chronic condition.

HCP availability can also significantly decrease HCP access or, in some cases, the perception of access. If patients need to wait a significant amount of time before they can see a specialist, it might dissuade them from even bothering in the future or lead them to solely rely on other PCPs less trained in a specific condition.

This can impact a patient at various points in their journey, including pre-diagnosis, during a flare-up and when they have relocated and are searching for a new specialist. One AnkylosingSpondylitis.net caregiver advocate recounts that, right after her husband was diagnosed, “our family doctor referred him to a local rheumatologist. When I called, they said it’d take 3-4 months to get in to see the doctor.”

Scheduling concerns can arise across various specialties, as well as various regions, not just those with limited access to a certain type of specialist. Migraine In America 2020 survey findings reveal 43% of respondents who currently see a headache specialist and 39% who currently see a neurologist need to wait at least two months for appointments with those respective HCPs. And 13% of Atopic Dermatitis In America 2020 respondents who currently see a dermatologist avoid making appointments due to having to wait a long time for appointments.

Balancing Health Needs with Insurance, Cost Concerns

Unfortunately, for many people with chronic conditions, finding a relevant specialist is just one hurdle. Being able to pay for care, whether through insurance or out-of-pocket, becomes a whole other layer.

For one AnkylosingSpondylitis.net patient advocate, “My healthcare was always money based: I went to doctors as I could afford them.” One IrritableBowelSyndrome.net advocate, who said he “can’t afford good health insurance,” explained that he “also can’t afford to see a doctor as often as I would like or need to because of the copays and expensive costs of certain procedures.” Additionally, a Psoriatic-Arthritis.com advocate discussed being “put on a payment plan with my doctor because I can’t afford the visits.”

For some, the challenge is that their insurance plan won’t cover certain specialist types or a specific specialist is out-of-network. Others simply can’t access affordable health insurance. Some might have coverage but are still burdened by out-of-pocket costs.

Regardless of the situation, health insurance and cost issues can negatively impact HCP access across various conditions. For example:

  • One-fifth of COPD In America 2020 respondents said they avoid seeing an HCP, unless they absolutely need to do so, due to cost concerns; a nearly equal amount said healthcare costs have prevented them from receiving needed care.
  • 14% of Asthma In America 2020 respondents who do not currently see a specialist cite the cost of seeing a specialist or inadequate health insurance coverage.
  • Nearly a third of Migraine In America 2020 respondents who currently see either a headache specialist or a neurologist pay at least $50 per visit.

Insurance-related HCP access issues can also arise when people relocate or get a new job. An AxialSpondyloarthritis.net patient advocate, who recently did both, had to wait longer than expected to choose a new plan and search for a new rheumatologist; as a result, she ran out of her biologic medication.

Lacking Awareness About Need for Specialist Care

While many people can’t access HCPs for a number of reasons, some might not realize a specific specialist could be most impactful for their care.

One AtopicDermatitis.net patient advocate admits that, despite knowing she had to manage her eczema, she “somehow never really considered it a serious medical condition” and would end up sticking with “the same routine I always had.” Being able to eventually communicate the severity of her symptoms led to her connecting with relevant specialists.

A lack of condition severity, or not being able to communicate that severity, might also reduce the likelihood of pursuing or being referred to specialist care. To this point, Hidradenitis Suppurativa In America 2020 respondents who currently see a dermatologist were more likely than those who don’t to currently be diagnosed with a severe form of the condition; at the same time, respondents who don’t currently see a dermatologist were more likely to not even know their current stage of diagnosis.

In some cases, like for those experiencing less severe symptoms, they might feel they are already receiving the care they need from their PCP or other HCPs. More than a quarter of Asthma In America 2020 respondents who do not currently see a specialist said they have a great relationship with their PCP but might see a specialist periodically, if needed.

The Role Healthcare Companies Can Play in Mitigating Access Concerns

For healthcare companies, further understanding the barriers to accessing relevant specialists, specifically how it impacts people within various condition communities, can be helpful toward developing solutions that fix those access gaps.

Fortunately, the evolution of technology serves as a potential opportunity for healthcare companies as they look to support patients on their health journeys. Specifically, the rapid growth of virtual care approaches, such as telehealth, since the beginning of the COVID-19 pandemic has proven to be a test drive for finding ways to fix HCP access problems.

In fact, findings from Health Union’s ongoing COVID-19 Consumer Attitudes and Health Behaviors Survey series, which has tracked telehealth use throughout the pandemic, reveal that telemedicine appointments have become commonplace and increasingly accepted as an alternative to in-person visits in some situations.

Specifically, nearly three-fourths of respondents – all living with chronic conditions – reported in fall 2020 having at least one telehealth appointment during the pandemic. Importantly, 44% of respondents said they were “extremely likely” to consider using telehealth post-pandemic. Additionally, more than six in 10 survey respondents who had used telehealth rated convenience as at least somewhat better than in-person office visits.

These findings further illuminate telemedicine as a potential opportunity for mitigating some of the concerns people with chronic health conditions often experience around distance, scheduling and health insurance.

Engagement on Health Union’s growing portfolio of online health communities combined with large scale, patient-reported data from its syndicated In America surveys can offer unique insight and understanding into nuances of the patient journey experienced by different groups of patients. Learn more about Health Union’s custom media, marketing research and clinical services that can help you create smarter, more effective solutions for patients and caregivers.

Related Articles

Mitigating the Misdiagnosis Journey

Nearly half of IBD In America 2020 respondents living with Crohn’s disease said they were previously misdiagnosed during their diagnosis journey.

Survey: Dermatologists Improve Hidradenitis Suppurativa Patients’ Confidence

Only 44% of Hidradenitis Suppurativa In America survey respondents currently see a dermatologist; of those, 43% see both a dermatologist and a PCP.

Addressing Gaps As Telehealth Use Grows, Satisfaction Varies

At that time, 49% of respondents – all with chronic health conditions – had participated in a virtual visit with an HCP over the previous four months.