Jana Bartley, a nurse for twenty years, has seen first hand patients fall through the cracks in the health system. Unfortunately, she's not alone.
Four-fifths of Canadians find the health care system too complicated, and more than three-quarters say that navigating the system is a challenge, stressful, and confusing. "People don't know what they don't know," says Bartley. Having been a legal nurse consultant for many years and working with several medical malpractice lawyers across Canada, she has seen her fair share of tragic outcomes. "I decided I'd rather help to try and prevent a tragic outcome than read about it after the fact," she says.
"I had many lawyers disclosing to me that most of the calls that they received weren't from people looking for a lawyer; they were asking for help. This really hurt my heart and opened my eyes in terms of how healthcare consumers were feeling. they're confused, frustrated and scared, trying to navigate the system themselves," she notes.
To address this critical issue, she created Integrity Healthcare Consultants (IHC) to ensure patients have full access to knowledgeable experts who know the healthcare system and can ensure they have the right information, have the best care, and feel empowered and engaged to make informed decisions that are right for them.
Bartley recalls, "My very first client was from New Jersey. She called me and said 'I am my friend's power of attorney and she is in the hospital and needs my help, but I can't take time off work. I can't travel to Toronto. Can you help me?' ... This was our first success story. I will always remember the sense of relief in her voice when I said that I will help every step of the way.
A much sought after expert on health issues, Bartley has spoken at medical annual general meetings for health care professionals and disease support groups. She has appeared on Rogers television three times, co-authored a book, and is cited in various research articles.
While working inside the hospital system, she became acutely aware of how many health issues could be prevented, particularly by medical professionals otherwise hampered by corporate politics and bullying. When she voiced her concerns to improve corporate cultural, morale and ultimately patient care, however, she was summarily dismissed from her job.
"So that is what inspired me to build a hand picked team of healthcare professionals from different specialties who share my passion to be able to provide navigation and education services," she says of launching IHC. "We take the worry out of trying to navigate and learn the health care system, and treatments. We shoulder all of that for you, while providing you with a thorough description and plan for the actual care and education."
With doctors already stretched for time, it is a challenge for them to discuss all options of care or treatment with their patients. Or, patients may not completely understand what their doctor says, nor completely retain the medical advice they're told. In many circumstances, patients and their families will take it upon themselves to do their own research, typically on the internet. "Although we encourage our clients to be knowledgeable, we do caution them on Dr. Google. We advise them on how to get good quality, information that they can rely on." Seniors are especially vulnerable, a demographic tending to have multiple chronic conditions or cognitive impairments, adding to communication challenges.
Those are many of the reasons an advocate like Bartley can help: to translate medical terminology, sit in on appointments or family meetings, take notes and ask the right questions — whether for the patient themselves or on behalf of a family member. The "sandwich" generation in particular is struggling with full-time jobs, kids and aging parents. She wants physicians to see her and her team as allies and part of the health team. "We all want the best for our patient and we speak the same language, so teamwork is the best approach."
Bartley has met many doctors who feel that the services of Integrity Healthcare not only benefit the patient, but also the healthcare team. In doing so, she has been able to decrease hospital admission and readmission rates for her clients, decrease hospital stays by speeding up the complex discharge process, and thereby preventing patients from contracting potential hospital infections.
In addition, Bartley has been able to expedite medical tests and services, and reduce medication errors. For example, the children of a man named Walter called her in desperation as they needed imminent help for their father. He was diagnosed with hydrocephalus and needed life saving brain surgery. She was able to expedite surgery from a five-month wait to a five-week wait, just by speaking directly to the neurosurgeon and stating Walter's progressively failing condition. "Surgeons have very little time allocated to them by the hospital, so that is one factor that contributes to long wait times for operative procedures," Bartley notes.
She was also there to make sure Walter's family's questions were answered to their satisfaction, and to help coordinate home care services to ensure a safe home environment for Walter when he was discharged after surgery. "People assume they're in safe hands, and safe care, but there's nobody coordinating the multiple doctors that they're going to see, and the doctors don't routinely speak to each other. So there's many pieces to the puzzle, but no one putting the pieces together. "We encourage our clients to always follow up to get results after any type of diagnostic procedure and test. We coach them to be part of the team and to be accountable for their pieces of the puzzle," says Bartley.
A disconcerting statistic is that three in five Canadians over the age of 20 have at least one chronic condition. Having a pharmacist as part of the multidisciplinary team at IHC allows for timely medication reviews. When clients have multiple doctors prescribing medications, it can be a pharmaceutical nightmare.
Bartley can also relate to being a patient, having been diagnosed with her first of four chronic diseases when she was eighteen years old. "I remember when my mom and I heard the doctor say 'you have Crohn's disease'. I remember thinking 'disease'? You must be mistaken because I am only 18." Tests, procedures and multiple medications seemed to be the answer and her future, but when she decided to think outside of the medicinal box, she discovered non-medicinal options that have had her symptom free for years.
These are critical needs, especially when some eight million Canadians are providing care or assistance to a loved one. For some, that means coordinating appointments with family members who live in another city. Indeed, the latest statistics show that more than a half-million Canadians had to reduce their working hours due to care giving, while nearly four hundred thousand left their jobs to provide care for someone. "Many family members don't feel they are the best person to be providing the care to a loved one; they don't get trained for the role, they seem to be 'assigned'," says Bartley.
Navigating the system will become increasingly top of mind for more and more Canadians in the very near future, with a major concern being how to obtain the best health care possible. "There are medical errors and misdiagnoses being made consistently," Bartley explains, "there is just no process for follow up and coordination for multiple services. If a healthcare consumer is being investigated for an illness, they need to be their own healthcare champion."
There are seven million medication errors a year in Canada, she notes. "That's why IHC has a pharmacist to do medication reviews for individual and corporate clients."
"Doctors don't intentionally make mistakes or misdiagnose, but it's happening because our system is so complex. We see a different doctor for every part of our body, but unfortunately they don't have the opportunity to talk to each other. Our hope is to prevent, educate and just help people realize all their options, and be informed." That means IHC will facilitate coordination between different doctors and hospitals; help with medication management and pharmacy engagement, and coordination of priority home-care if required.
"We navigate, educate, and advocate," she says. "Our big goal is to be able to empower the client, and have our clients engaged in their health care decision making." On the corporate end, IHC educates employees on health promotion and disease prevention. That means the potential to save employers thousands of dollars from benefit claims, and decrease employee absenteeism due to sick time.
Corporate packages can include onsite health screening for early illness detection, health coaching for chronic disease management, medication reviews and health promotion and disease prevention education sessions. "The sandwich generation are particularly affected — those who are in the thick of full time jobs, kids, and aging parents. They're not focusing on their health and that can really take its toll. That stress is huge. That contributes to corporate absenteeism, and mental health issues," Bartley adds. That's why IHC offers to come to the workplace so employees don't have to neglect their health. "So for example, an employee with diabetes, we want them to know the importance of managing their diabetes, to prevent potential cardiovascular complications that they are at high risk for."
The Sanofi survey published in June 2016 revealed that 64 per cent of plan members with chronic conditions would meet with a health coach to manage their condition, if their plan covered it. And so, until the time comes when the healthcare system is more family-centred, education-focused and navigation-friendly, Bartley's team is there to empower, educate and support you to live longer, better lives.