After bouncing around doctors’ offices in an effort to treat her debilitating back pain, Maureen had become discouraged with the lack of progress. She had seen multiple specialists yet nothing seemed to provide relief, and she began to feel disillusioned as she struggled to navigate the health care system. “I seemed to be spending a lot time and a lot of money just going around,” she says.

Maureen struggled with her condition for a number of years, until a friend of her daughter recommended she speak with Laurie Jenkins, a patient advocate from Healthcare Navigators Inc. After hearing Maureen’s story, Jenkins believed that she could help, and convinced Maureen to get a new MRI. Once that was completed, Jenkins spoke with Maureen’s family doctor about referring her to a surgeon who had expertise in similar cases.

Jenkins proceeded to not only arrange an appointment with the surgeon, but accompanied Maureen to the hospital and provided the surgeon with a detailed medical history of her previous encounters with the specialists. Once the details of her case were laid out, the surgeon quickly diagnosed her complaint and recommended back surgery.

After some deliberation with Jenkins and her family doctor, Maureen agreed to the surgery and soon after found her quality of life improved dramatically. In a matter of six months from the time she first contacted Laurie, the pain that had plagued her for so long had subsided. “I couldn’t thank her enough for all that she did for me,”  she says.

Navigating the maze

Unfortunately, the issues Maureen faced in accessing the appropriate care and treatment are not uncommon. For many patients, simply navigating the health care system can often feel like wandering through a maze. Especially for seniors, staying on top of appointments, medications and lab tests can quickly become overwhelming. “It’s easy to get lost… it’s not that [patients] don’t have faith in their providers, they just have questions and there’s no one to ask,” explains Jenkins.

For these reasons, more and more families are turning to patient advocates like Jenkins to help guide them. While more common in the United States, a number of private companies providing patient advocacy services have emerged in recent years across Canada. Importantly, unlike the nurse navigators in hospital cancer programs or the case managers of Community Care Access Centres, these companies are “outside” the publicly funded health care system. This means that patients and families who use their services pay for them out-of-pocket.

The package of services offered to patients varies widely, from attending appointments, to creating a personal health record, to calling or visiting patients at home. The advocates themselves are typically former health professionals, such as nurses, who witnessed patients falling through the cracks in the system first hand.

In some cases, advocates can provide advice on a one-off basis. However, much of the business involves establishing relationships with the patients over time. “Even though I’m doing all these specific tasks and meeting certain goals, it’s the overall feeling of safety and security that you have with an advocate that [they’re] looking for,” explains Susan Hagar of NurseOnBoard, a patient advocacy company based in Ottawa.

Given the diversity of the clients who hire patient advocates, there is significant variability in terms of the period of time spent working with each patient. While some patients only require short-term help over the course of a few weeks, others can require help for over a year, with advocates following up with them two or three times a week.

Broken system?

To some, the emergence of patient advocacy companies is a symptom of a broken system. Should the process of accessing and managing our health care really be so complicated that we need to hire someone to tell us where to go and what questions to ask?

Nevertheless, for many families who use the services, the help is invaluable. Although the patients seeking these services cover a broad range of diseases and demographics, the most common clients of patient advocates are the elderly parents of adult children.

Many of these adult children are simultaneously attempting to support their own children while ensuring their aging parents are taken care of. As a result, they are “really having a challenge with that family-work balance, trying to multi-task with family obligations and work expectations,” notes Jana Bartley of Integrity Healthcare Consultants based in the Toronto area. In addition, many others struggle with the now common reality of no longer living in the same city as their parents, which prevents them from providing the hands-on assistance that was common in previous generations.

As a result, a role has emerged for patient advocates, particularly as the incoming wave of seniors from the baby-boomer generation has highlighted the challenges of getting appropriate and timely care. As Hagar explains “the reason patients may need an advocate is that the system is so much more complex.” Many patients visit multiple specialists that often don’t communicate effectively with one another, leaving it up to the patient to provide an accurate medical history and ask the right questions. For seniors with multiple chronic conditions or cognitive impairments, this can be extremely challenging.

In fact, a big part of the patient advocate role is knowledge translation. Given the pressure to see increasing numbers of patients, many physicians simply do not have enough time to spend an hour with a patient to ensure that everything has been communicated as clearly as possible. This is particularly problematic as research has shown patients can recall correctly as little as half of what they are told by their physicians, with treatment information often being the most poorly recalled.  For that reason, having an advocate who is familiar with medical terminology sit in on appointments with the patient can be extremely beneficial in ensuring “that we leave those appointments with the answers we were looking for and a clear plan moving forward,” says Hagar.

For some patients, there are concerns that bringing a patient advocate to appointments could make their physician feel as though they don’t trust them or that the advocate might challenge the physician’s decisions. However, most advocates reported that although this may be an issue at the first appointment, once a relationship is established and the physician understands their role in helping to implement the treatment recommendations, any uneasiness quickly dissipates.

This type of assistance is a major component of the primary benefit of hiring a patient advocate – facilitating continuity of care. According to Perry Kimber of OverC Health based in Saskatoon, for many patients, “with the number of different players involved in their care, it’s nice to have one person who is always there with them, no matter which provider they’re seeing.”

Private option in a public system

Based on the anecdotal evidence reported to Healthy Debate, the benefits of patient advocates seem substantial for many patients – improved continuity of care and assurance for families that their loved ones are being looked after.  However, because these services are offered privately, there are concerns over their impact on the equity of health care for Canadians.

Research consistently shows that people with lower income tend to have poorer health, and therefore it is likely that many of those who would benefit the most from patient advocacy services cannot afford them. This could “potentially lead to inequitable access to care if you have someone who can advocate better and get services that someone else might not get,” notes Monika Dutt, chair of Canadian Doctors for Medicare.

This financial barrier is something that advocates acknowledge is an unfortunate reality of the services they provide. As Kimber explains, “we would love to see everybody out there who has the need to have access to this kind of service.” However making that a reality is challenging, particularly for those of lower income status as the costs of hiring a patient advocate can range from $100 to 150 per hour.

Given the intensive follow-up intrinsic to this type of role, some advocates feel that their services are something that will always fall outside the public system. “In Canada, we have fantastic health care providers and in a lot of ways a great public system, [but] I think logistically it would be impossible to do, and it would put the cost considerably higher,” notes Kimber. “A doctor will do a great job of telling them what they need to do when the client comes to visit, but a family doctor isn’t set up to call dozens of clients every day to see how things are going,” he says.

Nevertheless, advocates suggested that although they represent a private option outside the government funded health care system, their services can actually benefit the public system. This is because patients with uncoordinated care tend to consume a disproportionate amount of health care resources, including hospital admissions. However, at this point no research has established that advocates decrease costs in the publicly funded system.

Lack of regulation

An additional aspect of being a relatively new private service is that to date, private patient advocates are not considered certified health professionals and therefore are not regulated or standardized.  This means that to provide patient advocacy services, there is no requirement to demonstrate any specific qualifications to an independent organization as nurses and physicians do to their respective colleges.

As a result, patients considering hiring an advocate should assess their competence prior to committing to a contract. This can be accomplished by meeting them personally, developing an understanding of what can be provided, and speaking to others who have used the service previously. Although all of the advocates interviewed by Healthy Debate were either former or current health care professionals, as these services potentially become more prevalent, an assessment of the background knowledge of an advocate will become essential.

This was acknowledged by Jenkins who noted that “it’s really important that the quality of the advice and information be sound, otherwise there’s the potential to actually create new problems that could be worse.”

Niche service or growing trend?

Whether it be attending a follow-up appointment with an aging parent or aiding in the transition back to the community after a hospital stay, the support received from a patient advocate can make a world of difference for struggling patients and families.

Nevertheless, it remains to be seen whether there will be the same proliferation of patient advocacy services in Canada as there appears to have been in the United States. Given the stark differences in the systems in terms of health care financing and its associated complexities, it is possible that the market for privately funded patient advocates will always remain limited in Canada.

However, despite consistent efforts to integrate care, it is undeniable that many patients continue to fall through the cracks. Considering the role of patient advocates in bridging these gaps, as well as the aging Canadian population, there is the potential that the use of patient advocacy services will increase rapidly in the coming years. If this is the case, it will become all the more important to conduct research to better understand the impact these providers have on patient outcomes and health care resource use.