It was two years ago when Richard Miller*, 34, was diagnosed with Lyme disease. He received the news in a voicemail from his doctor.

“I remember smiling from ear to ear when I heard the message,” Miller says. “I was relieved to finally have an answer and to know that it wasn’t life threatening.”

In the months prior, he had been experiencing what he describes as debilitating symptoms: 

“At first, I just had some muscle weakness and fatigue — but once constant back and kidney pain, nausea, unexplained weight loss, and dark under eye circles were added to the mix, I knew something was really wrong.”

Barriers to accessing care

The time between when Miller first called his primary care physician to when he received a diagnosis took about three months — an unfortunate but common experience for many seeking answers.

The average wait time to schedule an appointment with a doctor in the US is 31 days. For specialists, like the infectious disease specialist Miller was eventually referred to, it can be even longer. And trying to figure out the cause of a set of symptoms involves multiple appointments, conversations, and tests — all of which take additional time.

Lack of time, money, and resources can all be barriers to accessing care, but longer wait times create hurdles too. Those wait times, along with difficulty in finding doctors who are accepting new patients, are often the results of a shortage of available doctors across the country. 

The physician shortage is not a new problem; it has been going on for decades. As the aging population in the US is expected to increase 47 percent by 2050, there’s a higher demand for care. And as many physicians are nearing retirement, there are not enough new doctors to replace them. Not to mention doctors who stopped practicing altogether for other reasons like burnout, something more common since the start of the COVID-19 pandemic. 

Getting answers while waiting for answers

There is not a simple solution to alleviating the pain points from the physician shortage — but, in the meantime, patients are still seeking support. For Miller, though his doctors were working hard to get him a diagnosis, he spent more days at home with his symptoms than inside the exam room. 

“I started googling my symptoms when I first started feeling off,” he shares. “It probably caused me more stress and worry than relief, but I needed to see what I could find out.”

Like many patients, Miller took to the internet between appointments to learn more about each condition his doctors were testing him for.

“Since I knew my body and my symptoms better than anyone, I also thought maybe I might stumble across something my doctors weren’t considering,” he adds.

Doing online research can be a helpful way to learn more about health ailments or diagnoses, but there is also a lot of misinformation out there, so relying on reputable sources is vital. 

Organizations like Mayo Clinic and Cleveland Clinic have “health libraries” on their websites with a wealth of information on different health conditions. Those pages can be great places to start, though they may not have answers that perfectly align with each patient’s individual experience.   

Resources to support post-care questions

When Miller eventually did receive a diagnosis, though relieved, he shares it was difficult to get questions answered about his treatment plan. After experiencing a rare side effect while on the medication prescribed to treat Lyme, he had trouble contacting the doctor who wrote up the prescription.

“That voicemail was the last time I heard from him,” Miller says. “Despite calling his office and leaving messages, that was it. No one called me back — not the doctor or a nurse or a receptionist.”

While this could have been an isolated incident for any number of reasons — a short-staffed office due to a bug going around or a message mistakenly not being delivered — there are other resources available to help those like Miller who may face challenges in accessing health care support post-appointment or diagnosis. 

For simple questions, consider a patient portal, which is an app or secure website that allows patients to access much of their personal health information. These are provided to patients by their doctor’s office and are usually part of the larger health care system their doctor is associated with. Within the portal, patients can digitally access information like doctor’s notes from visits, lab results, immunization records, see upcoming appointments, and more. Many even offer the option to message your provider to ask quick questions or request prescription refills. 

Sometimes it can be more beneficial to talk through questions on the phone. For that, there are 24/7 nurse hotlines offered through most hospitals and insurance providers. Tufts Health Plan, for instance, offers one for eligible members to speak to a registered nurse to help determine whether they should seek emergency care, get input on treatment options, or learn more about an ongoing condition.

And for those with chronic conditions and other health needs, Tufts Health Plan also offers more personalized support through a care team of nurse care managers, pharmacy technician specialists, community health workers, and more. 

“There can be barriers to obtaining prescribed medications or understanding treatment instructions,” says Sarah Jarrett, a pharmacy technician specialist at Point32Health, the parent company of Tufts Health Plan. “As part of the pharmacy team, we strive to simplify that experience.”

For individuals who have a medication-related challenge, a pharmacy tech specialist can serve as the point person between member, provider, and retail pharmacist. Eligible members can speak to Jarrett or another member of the pharmacy team to ask what to expect from their medication or questions about their plan benefits, like understanding why a prescription was denied. 

For members taking multiple medications at once, the pharmacy team can also provide information on how those medications might affect one another. Jarrett notes that a member could have multiple providers and pharmacies, but those parties may not necessarily be communicating with one another.

“Health plans are in a unique position to support members,” Jarrett adds. “Since we’re able to access medication details a provider is requesting from a pharmacy, we can help if the member experiences any challenges in accessing the medication or understanding its effects.”

A patient-centered health care system 

Even with support, navigating the health care system can be challenging for so many patients. Improving communication and access to care will be key to improving patient outcomes, especially as the health care landscape continues to change. It is going to take a collaborative effort between patients and their providers and pharmacists and insurers to provide the necessary support and create a more patient-centered health care system.

*Name changed to protect privacy of respondent.

Tufts Health Plan, a Point32Health company, is a local nonprofit organization that offers health plans for every stage of life. With a commitment to personal service, Tufts Health Plan provides quality coverage and dedicated support to help guide and empower healthier lives.