The rise of the private patient advocate

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.

The comments section is closed.

  • Kathy says:

    Wouldn’t be able to afford it!

  • Theresa says:

    Hello. Are there any advocates available in the Kingston/Belleville area? I am needing a patient advocate for several people with thyroid issues. We need someone that is well educated in thyroid testing, complications and various treatments to arrive at “optimal” thyroid levels. Someone who is not afraid to tackle the present day established, undereducated medical profession that mostly uses TSH lab values and synthetic thyroid replacement hormone. If you are that person please contact me. We don’t care where you are in Ontario as we have travelled many hours to try and get proper care. Sadly we lost two excellent providers as they moved out of province.

  • Milan says:

    I think we r of extremely big need of patients advocacy. Probably if I had one I would be speared of horror that I am since I was pressed to totally questionable craniotomy and tragically got infection that was totally ignored by surgeon or any doctor I would see until it was obvious and quite late to save me from horror that would continue. I was fully asleep after taking over the counter drug which had strong impact on me and tragically for me, husband called ambulance( I looked like I am not breathing) and I end up in teaching hospital where I was told I need urgent operation for benign tumor. I did not understand completely what they want( I felt perfectly fine no flue symtoms so what is going on?? I felt trapped ,pressed by many doctors? who would visit me every day (it was WAR for a week )tried to scare me or making joke that I am afraid of “cosmetic surgery” and in case I live hospital against doctors advice I can never be admitted to that hospital!!!! If there were advocacy organizations I could turn to for help I am totally sure that operation would never take place , the same what was going after till now. I think there is something terribly wrong with our health care system. I can see how over the years malpractice lawyers are growing like “mushrooms after rain” etc. But only macro percent of cases are taken by them or end up in court. I cannot look at my self in the mirror how stupid and naive I could be to fell in that trap. I have panic attacks when I have to go to doctor or cannot imagine myself going to hospital. This looks to me like PRODUCTION must be accomplish no matter how. This is Canada?????

  • Barb Lamb says:

    This article speaks to the many issues of navigating the changing health care system in Canada and certainly British Columbia. The need to have referrals to specialists for everything is a big costly issue, hence long wait times and often dire health status of the patient by the time they are finally seen. I have 21 years of nursing experience and since retirement have now first hand been experiencing the frustration of trying to get a diagnosis. Doctors seem to have lost the ability or maybe desire to listen to the patient, this is part of the system breakdown to getting a diagnosis. Even with my nursing background and my own ability to verbalize my problems I have been on the healthcare circuit now for 3 years trying to get a diagnosis.
    Healthcare professionals in ER, nurses, doctors, specialists nurse practitioners all use their own assessment of the patient
    and slot them into standardized data, that unfortunately doesn’t fit the patient’s issues. If the patient is viewed as chronic complainer, then they must be depressed, so out come the prescription writers. The overuse of pharmaceuticals in Canada is a symptom of the easy way out to mask often serious health issues. My next step to finding out what is wrong before it is too late is going South of the border to , yes, the USA, to spend my money to at least get expedited care. Healthcare professionals need to relearn basic skills, “listen” to the patient, and learn to see the body as a integrated system to know how one problem can affect the other.

  • Louanne Ohlhauser says:

    As a nurse who has worked in hospital and community health I see the issue as partly caused by a lack of communication within the health care system within its own ranks. There is a huge lack of knowledge about what services are available and how to access these services within the health care system itself. It’s a wonder how doctors can keep up at all. I think what is needed is more education about resources within ground level health care providers and the public not just doctors. As well the current group of seniors who are not internet savy have been cut out of the knowledge exchange.

  • Christine Silva says:

    Hi Leslie,

    I have just started building my Nurse Consulting business 1.5 months ago and after reading this article, I am considering adding patient advocacy to the list of services I provide. I am in Hamilton, Ontario. What would be your advice on getting started?

    I have been an RN for 12 years now. I am also a wound care specialist and now currently studying to be a Diabetes Educator.

    Some direction would be much appreciated.

    Thank you,
    Christine Silva

  • sam plover says:

    Yes I would use an advocate in Canada. I should not have to, and I’m not even sure an advocate or even a lawyer would help. Doctors are protected by the government and the College of Physicians and Surgeons.
    If you are in any way obstructed or smeared by a doctor, no hero will step forward, it is a silent code in the medical system and is broken in a big way.
    It works for some, the voices that won’t get heard are many and so the god like behaviour continues.
    I do not think any advocate could help when doctors start being dishonest. Yes they can help navigate for some who do not understand medical terms or have trouble expressing themselves, but an advocate cannot force a doctor to be honest or less egotistical.
    The fact is that doctors have nothing to fear, yet their self protection practices, even stooping to dishonesty, shows their extreme fear. And they know that they hold the power, which even a lawyer will not touch.
    It just boggles my mind how you can have a relatively happy life ruining people knowingly. Ruining any chances of fair health care. This is the way for many and I see nothing changing it.

  • Emma says:

    I spent almost 10 years going in circles and wasting OHIP’s money because doctors couldn’t diagnose my Colitis. A $125 test (not covered by OHIP yet) could have save much money, suffering and let me keep my old career. Regretting not going to the Mayo Clinic.

    • sam plover says:

      Emma, I did end up going to the Mayo, only to have the papers sneered at by these doctors. They really resent honest diagnosis and opinions and especially if you are a woman.
      But you see, there is a reason they do not work at the Mayo….they cannot pull these protected stunts at the Mayo.

  • Robert Hansley says:

    Seems like the system (Hospitals) and the private companies push all Financial responsibility on to the patient. Insurance companies reject claims and hospitals send more invoices. This is becoming a very broken system. The Mirage that we have a good health care system is just that.
    Although expensive in other parts of the world you can get insurance and claims aren’t denied. Ever wonder why patients always leave Canada to go to Europe for treatment? Wait times and rejected claims, hospital invoices and politicians sitting on hospital boards. Its corrupt !
    Wait till you need help and they take everything from you and blame you for bad health (I guess being an fitness instructor for 15 years brought that on me)

    • sam plover says:

      It is a corrupt system because all power was given to doctors and now they do not know how to let go.
      I don’t think they want the power, but it has become ‘the system’. It is a very entrenched systemic issue. Oh well, once the patient dies, it’s a quiet patient. And even if a squeaky wheel, it falls under that allmighty power.
      There is no autonomy for the patient within institutions where individuals are not protected by an opposing entity.

  • AA says:


    I am looking for help to advocate for someone with more complex and rare health problem that’s causing the individual to fall through the cracks of the healthcare systems. Looking for someone with expertise in acute care hospitals, rehab, palliative care, CCC and knowledge of CCAC in GTA, Ontario, Canada area. Thanks

  • kimberly saulis says:

    Hello Ladies. I am in NB. 30 years experience in all aspects of nursing. I already have my own nursing business and have been advocating for clients over the past 30 years, but now I want to focus more on the advocacy. I am an RN and am a certified Legal nurse consultant. I would love to speak to someone about growing this part of my business. I am most concerned about how to advertise, how to prepare with my regulatory body, and what documentation is required that I may not already be doing. Today alone, I have advocated for three families at no charge. It never occurred to me to charge them for this service, it just seemed to be a natural extension of the care I provide, but after spending nearly all day doing this, and not making money for my time, it seems I should charge for this service. Is there a certification program we can take to increase our skills in this area? I would really love to learn more from you ladies if you dont mind sharing your expertise with me.

  • Frances says:

    In 2 months I will be 92 years old Therefore This is too Late for Me. I did NOT fall But I broke my back twice in 3 places– Bones are very Brittle

  • Dawn says:

    Very interested to learn more and be a patient advocate/health care navigator in Alberta. I am a Registered Nurse for over 27 years with various experience and skills including injury prevention, patient safety, quality improvement and nursing practice consultant.

  • Sherry Johnston says:

    I am a RN from Tobin Lake, Saskatchewan who would love to be involved in the patient advocacy role. I did not register my license the past few years as have had medical and care issues that took priority for my husband.
    I have considered starting my own patient advocacy company but think I would much rather work for an established one so I would not have the stress that would be involved. Please contact me please about how this could work in the Northeast area of SK with one of your preexisting companies.

    Sherry Johnston

  • Donna Hinschberger says:

    I found your site after conducting research about healthcare advocates. I am an RN with 27 years experience in a variety of settings including Pediatrics, Leadership and ER. I recently moved back to Ontario after living and working in the Dallas area for 20 years. I spent a great deal of time since being home advocating and caring for my Father who had some deteriorating health conditions. Since being back in Ontario and having numerous discussions with a variety of people, I am greatly discouraged and disappointed about the lack of support for people who do NOT have someone with healthcare knowledge to advocate for them. Thank you for this article. I am considering looking into starting a Healthcare Advocacy business on my own or seeking employment with one.

    • Sherry Johnston says:

      I’ve seen the same problems first hand and is very discouraging. I have over 24 years of RN experience and wow the gaps and cracks are everywhere. There really should be a way that our provincial health care reimbursed or would pay for these services as is a crying need and would save them money in the long run.

  • Margaret MacLennan says:

    Too easy to fall through the cracks in a small hospital.

  • margaret maclennan says:

    Yes, I would hire a Patient Advocate for myself or a family member.
    I have first hand experiences myself as well as other family members with ‘falling through the cracks’ in health care. There are also ‘bully docs’, poor pharmacists, and thoughtless social workers in health care that you have not mentioned in the article. By the way – have you ever tried to get a copy of your medical records? I know I need a Patient Advocate.
    To help my family in future, I want to draw up a ‘Medical Representation Agreement’ with my lawyer that will give specific instructions for the hiring of a Patient Advocate. I would some help to a do this which would include finding a Patient Advocate now to better understand how that would work.

  • Ken says:

    Who can be a medical advocate, what are the regulations for this postion?

  • Leslie Racz says:

    I work in Patient Advocacy and have here in Canada for the past 10 years. There is an increase in demand for this support from Private patients and their families.

    • Ken says:

      Looking for someone that is in the Kingston, Ontario area? Is there someone?

    • Bettina Mackenbach says:

      Hi Leslie,

      I would like to start working as a patient advocate. I am in British Columbia. How do I get started. Would I have to go into private practice?

      I have been trying to research this for a while and cannot find any specific answers for Canada as to whether certain credentials/background is required. I am a clinical dietitian and health coach and have been working in community, clinical and private, as well as corporate health/wellness.

      Some direction would be much appreciated.



  • Steve Hanson says:

    I have ms and am well educated. Still thencoordination functions for multiple health services and timely access are frustrating. I can see yhenbenefits of an advocacy provider for myself as well as many less educated, more challenged, and especially elderly patients. Cost is an issue. Savings to the public system is a research need!

  • f. strandholt says:

    I am a senior now facing multiple tests and also prone to anxiety.i have copd. I have a relative who is a nurse and she is helping me navigate the system keep track of test results etc. It has meant so much to me as I live alone and my daughter is not able to help as much.

  • Shirley avarell says:

    I think this is a great idea depending on the knowledge of the advocate. I am a registered nurse and at times the parts of the health care system are confusing to me. Would love to put some study into this and would love to be of assistance to the elderly trying to navigate the system as geriatrics has always bee my fielf of expertise.

  • michelle smith says:

    Great debate I am a Health Care Advocate in Toronto. I am also a nurse with 15 years experience. The public should know how important our role is. I also work in the hospital and I realize that the most common concern is that Toronto is very diverse city. Health care literacy should be a priority.

    • kadriye says:

      would you company me to my endocronoligist. had totatl thyroidectomy – trying to manage life and cancer watch out .
      are you verstile in endocronolgy?
      im 64

      • Jana says:

        Hi Kadriye,
        We at Integrity Healthcare Consultants would be happy to help and support you. We go to any appointments with our clients and discuss next steps with the healthcare team.

        Jana Bartley RN, BScN, MBA, LNC
        (416) 723-2190

      • Lisa Blake says:

        Would love to speak with you for a few moments, or email. I am opening my own LNC LLC and want to work in advocacy to prevent patients from having the need for an attorney. Frankly, I advocate non stop for misses and lack of standard of care in the ICU. Not because the MDs or RNs around me do not care, but its the healthcare system and overload. None of us became nurses because we wanted an easy life or easy paycheck. So with that being said, Advocacy is my true passion and something I am very exceptional at. I would love to have advocacy as a major portion of my LLC. Would really appreciate any input from a fellow nurse that has walked in those shoes.

  • Liz Case, M.A. says:

    I am a private patient advocate in Colorado (see Role of the Patient Advocate Liz Case on the internet) and appreciate this article, as it points out many of the important considerations needing attention by the various members involved in a patient’s healthcare. I also agree that credentials and training are a necessity in evaluating the potential advocate, as well as references and experience. When a recent aging patient required seeing 4 doctors during the same period of time, and was losing her memory having an understanding and capable advocate was essential. Her physicians appreciated the services rendered to this patient and commented on this, becoming an additional reference source. Fees can be on a sliding scale, thus allowing more low income patients to take advantage of advocate services.

  • Elena says:

    By reading other comments wanted to emphasize the fact that doing this advocacy for many years by myself on volunteer basis in different medical domains , and will join the group with a great pleasure

  • Elena says:

    Hello here is an another factor , that aggravate patient’s understanding over the course of disease- tremendous stress , taking away the ability to ”consume” the information and adapt to absolutely new situation… therefore the patient advocate- best solution to navigate through …

  • Tara blair says:

    I am simply looking for a pt to help….. I have been in the dental Field for years and have been told my compassion for the sicker pts, were over the top.
    I have five kids that my husband have raised and all but one is out with their own careers… My youngest is a freshman…. Long story short one of my girls work in labor and delivery and said there was a huge need in this area… Thoughts?

  • Leslie Racz says:

    This is an excellent overview of my work over the past 20 years as an extension of my Nursing.
    I am interested in research in this area.
    I would be interested as well in hearing from the reporters of this article.
    Thank you.

  • Kim says:

    For many years I was virtually caring for both my parents during their cancer treatments. I ultimately lost my career for the amount of time I was taking off.
    When my brother (who has CP) was seeking advice and treatment for a foot issue I became his caregiver. After many appointments with specialists, MRIs, X-rays I sought the support of Integrity Healthcare for help.
    I knew after circling the healthcare system for so many years; first with my parents and now with my brother, I couldn’t do that again alone. I needed an advocate.
    Jana attended an appointment with myself and my brother and spoke to the Orthopedic surgeon with such professionalism we were getting a new found conversation going. Jana suggested psyiotherapy and when the doctor agreed with her and commented that he hadn’t thought of the alternative solution I was quite impressed.
    We’re on our way to getting my brother to walk without the support of the boot!
    I was so passionate about the advocacy and helping one navigate through the healthcare system I asked Jana how I could become a part of the team!
    She welcomed me and I now work with the team of nurses at Integrity Healthcare Consultants helping people NOT to go through what I did for so many years.
    Not only did it save my sanity it saved me thousands of dollars. I cannot urge you enough to consider a professional when dealing with a loved ones care.

  • Jana Bartley says:

    Thank you for the encouraging comments regarding the article, I was please to have been interviewed.

    I would just like to clarify a few factors when hiring a patient advocate who is a nurse. When you hire a Nurse to be a healthcare navigator and patient advocate she is providing these services as a nurse which means she/he has standards to uphold to keep in good standing with the College of Nurses of Ontario. Therefore sound knowledge, skill and judgement based on a nurses formal education and years of experience should be considered advantageous. Additionally as nurses we have standards pertaining to documentation sharing, storage and confidentiality. If you hire an advocate and they are not a regulating healthcare professional I would encourage you to ask “where will my personal information be kept?” “Will it be in a locked area?” “Who will have access to my files?”

    At Integrity Healthcare Consultants we are a team of nurses and because we are a regulated profession, employees who have extended health benefits will be able to claim our services the same as a Chiropractor, Physiotherapist etc. depending on your benefits provider.
    But in all honesty if you did have to pay out of pocket if would likely be less time and money having a navigator than trying to navigate the system yourself and go around in circles – time off work, parking costs, gas, food?

    Additionally as nurses we educate clients on non-medicinal options and treatments, allowing them to know all options so they can feel empowered and engaged in their healthcare decision making.
    Physician typically have 7 minutes to spare (if they are lucky) per patient appointment. In this time they need to “assess”, “diagnose” and either write a prescription or refer you to another doctor. Everyone is stretched to the limit and the public are falling through the cracks at an increasing rate.
    Thanks and be well.
    Jana (416) 723-2190

    • Leslie Racz says:

      Hi Jana

      I am so with you. I would very much appreciate a chat with you as I am currently completeing a book that will launch Patient Advocacy work in Alberta. I would be intersted in asking you about Legislation and Programs within the Health System, as well as research across Canada.
      Look forward to hearing from you. Leslie Racz, BScN, RMT, CT.

    • Elena says:

      Hello Jana
      Many aspects were discussed of this particular mission that reinforce the need of such a valuable service…. wondering if anything exist in Quebec?
      Thank you
      Elena 514823-0696

    • sam plover says:

      There is no point in hiring anyone that works for and supports ideals of the existing system. In order to keep your job as a ‘health care professional’, when push comes to shove, guess which side of the fence such an advocate is on.
      I was in a profession once and I stood up for something and was promptly fired……later I was asked to come back to my job.
      I have never seen any healthcare person stand up and be counted.
      I have however had it said to me privately, I have seen sad eyes of nurses who knew what was happening, but in the end, they want that job.
      The system needs changing, we don’t need to add other jobs and complications to let patients become more hurt.

  • Janice Romanuck says:

    As a RN working “in the system” it is even challenging for myself to assist clients and their families in access to service. The rules for eligibility are constantly changing for equipment, placement and referrals to allied health professionals and specialists.

    Here in Alberta there are long term plans however these plans often are not implemented due to fiscal restraint and lack of polical courage and will.

  • Lorraine Hulley says:

    As a patient advocate in Ontario, a business I started after 30 years in the health care system, I have seen first hand the benefits experienced by clients in my practice. Patients overwhelmingly feel more empowered and supported and their families have peace of mind. We see ourselves as working along side the health care team, and have been very well received. Although we can’t help everyone, by helping those able to afford the service, we allow our system to then use resources to assist those that can’t.
    Lorraine Hulley MSc
    Niagara Health Partners

    • Eileen says:

      Hi Lorraine
      Very interesting article. Are you still in the patient advocacy business? If not do you have any other contacts for this. Thanks. Eileen Fitzpatrick

  • Virginia Miles says:

    An interesting and very timely article. The challenge of navigating the healthcare system can indeed be overwhelming. Having faced that challenge personally with family members dealing with complex medical conditions including MS, Alzheimer’s, type 1 diabetes and lupus, I now know what a difference a health navigator would have made. The pain and stress we felt were unbearable at times. No one should have to go through that. While there are many wonderful services and providers within our healthcare system if you don’t know what/who they are or how to access them they are of no help.

    As a result of my experiences as the “family navigator” combined with my extensive healthcare industry background, I started a company to help other individuals and families navigate the system so they can make the best decisions about their care options without the stress and frustration.

  • Linda V. says:

    While I believe with the current system of the way physicians are trained, advocacy is quite beneficial and even necessary, if we had physicians trained in Functional Medicine, the need for an advocate would not be as great. Functional medicine treats the cause of disease rather than the symptoms and treats the patient as a partner in their health care. It’s a whole new paradigm.

  • Naomi P says:

    As in Canad, the need for patient advocates is growing since the U.S. has a complex healthcare system. There is more need for independent patient advocates and not juts relying on those provided by the hospital, since those are beholden to that hospital and will not try to steer you to other outside sources that can help you more efficiently. That’s why patient advocate sites like MyDocHub can help people find the right patient advocates and educate them on the need for an independent patient advocate.

  • Farrah Schwartz says:

    So interesting to see this emerging as a trend in Canada. I studied Health Advocacy in the US just over 10 years ago and when I returned to Canada, there were no private advocates. The industry there now includes so much insurance navigation and negotiation, and it’s likely that advocates here will also begin to take on more of these responsibilities as people in Canada face increasing hardships when sick over the long-term.
    So much of the need described here also relates to health literacy, which we know is low across Canada. If we could teach people how to navigate the system AND plan it around their needs, we may not need roles like this. Right now, sadly, those who can afford advocates can benefit greatly from the support.

  • Jennfer I. says:

    Yet another contradiction in the health care system is highlighted in this article. That is, in a publicly-funded health care system, Canadians are expected to incur the private costs of navigating our complex and fragmented health care system in order to access services. This is a huge barrier to access services which can deteriorate one’s health status. As mentioned in the article, it would be interested to assess whether investing public-dollars to improve patient navigation can lower healthcare utilization. I would imagine that at least some duplicates in services could be eliminated?

  • Peter G M Cox says:

    This is a truly sad article. I can envision circumstances where, even in the best-run systems, this service could be of value and I take my hat off to the “entrepreneurs” who have moved in to fulfill this role. I’m sure the same could be said about what I’m sure is a growing business of providing private nurses and personal support workers (PSWs). However, I’m sure that in most instances the “need” for such services is made necessary by the failures of our “universal” healthcare system to make access easy, provide sufficient hospital beds and nursing staff.

    There appears to be a relentless focus on cost control of “frontline” services to patients while other, possibly more significant, savings can be made elsewhere: “Health at a Glance OECD 2013 Indictors” demonstrate that, per capita, Canada spends substantially more than Western European countries (who also provide universal healthcare) on “Medical Goods” and “Collective Services” while we employ significantly fewer doctors and nurses, provide far fewer hospital beds and have occupancy rates of acute care beds that are widely regarded (in Canada as well as internationally) as dangerously high. The consequent “rationing” of access to services creates the “need” for private patient advocates, nurses and PSWs – the squeaky wheel gets the grease”!

    Nor is “money” the causative “problem”: the “Euro-Canada Health Consumer Index 2010” points out that “What makes Canada’s placement in the bottom half of the rankings particularly troubling is the fact that per capita healthcare spending in Canada is amongst the highest in the world.”

    This is NOT what the founders of our universal healthcare system had in mind. Tommy Douglas must be turning in his grave!

    • Leslie Racz says:

      Hi Peter,
      I found your comment knowledgable and informative.
      Any interest in conducting research so we can help reform this access issue and make it available to all?

  • Sheila Mahoney says:

    I’m beginning a patient advocacy business in Barrie, Ontario and I am not a licensed health care professional. I believe that I can still help people manage their health care better even without that piece of the puzzle. My education and experience are primarily in palliative and end of life care on the psychosocial side of care. Even though I am one of the people who the field needs to be worried about, I agree that there are concerns.

    • Anne Graf says:

      How did you go about starting your advocacy business? I am an RN who would like to do something similar but am not sure where to begin. Any advice would be appreciated. Thank you
      Anne Graf

  • Donna Wood says:

    Having access to a professional who understands the issues, the options and the system would be invaluable particularly under stressful circumstances. Perhaps, medical insurance companies will see the advantages and offer some level of coverage even if it is a private venture.

  • Toni B says:

    I absolutely wish I had had this option while caring for my aging Dad in another province. It’s a FANTASTIC idea. It would provide so much relief to people who are raising their own families, but worrying about their aging parents.

  • Robert P says:

    Looking at the world of today, we have at our discretion the capabilities of employing any number of types of privately funded guides, coaches, and advocates. For example, in a brief sojourn of the net there were listed 13 different types of “coaches”.

    These superintendents of potential, as many are likely familiar with, range from those who work with executives to those can assist with maintaining a healthy diet. Historically, seeking expert advice and counsel is the hallmark of those who have succeeded where others did not. Arguably it has been noted in history that advisors, however well intended, were either vying for their own gain or simply not as equipped for the task as they led other to believe.

    Adding to this our present-day ever growing information-based society, and surely it is self-evident, that possessing knowledge is to know you cannot know it all nor is there anyone person who ever will.

    Accepting these points, the main takeaway from the article is the need for sufficient regulation and oversight of those who would become private patient advocates.

    As for the future, whether the system of health care is defective or not, the priority should be to maintain focus on client’s and their families receiving the highest quality care from the best evidence available. If, in accordance with these objectives, a client is so apt to have the means to privately fund a knowledge translator then market demands and accountability should in turn set the necessary standards.

    Following this, both private and public sector gains may not only be accrued for those with financial resources, but in time provide a means to advise a system not so harrowed as to be broken, rather, just in need of some outside advice.

  • Ellison Richmond says:

    Thank you for addressing this topic. I disagree with Kimber that having patient advocates in the public system would be impossible or would necessarily increase costs. First, patient advocates should improve patient outcomes and improve the efficient use of publicly-funded services, and therefore result in cost savings.

    Second, having advocates outside the public system dangerously removes incentive to create a more streamlined, navigable, sensible system: if (private) advocates are there to smooth over bumps created by an inefficient system, there is lowered incentive to improve those inefficiencies. This would result in increased costs for all taxpayers (as well as the clients paying for private advocates).

    Having publicly-funded advocates means the public system must find its own ways to improve patient navigation, and is therefore on the hook for a more efficient system. I believe this is the only affordable option.

    • Elizabeth Rankin says:

      The one problem I see with publicly funding patient advocates is not having the degree of objectivity and flexibility for problem-solving that might be needed. It is sometimes difficult to move the mountains that seem to be the obstacles to getting the patient the care they need in the first place.
      However, when patients have to spend money to get the care they need, and they have someone who understands how to accomplish this task which otherwise seems to elude those working within the current system, having a patient advocate would be an obvious benefit, not only the patient and they family but perhaps even for those employed by the system directly or indirectly.

      When patients don’t get the care they need for whatever reason that may be given, we all need to know why this happens or what holds one back from letting the patient know what the real reasons are. If patient advocates can help both patients and professionals, then maybe we’ll all benefit.

      Elizabeth Rankin

      • sam plover says:

        Objective is needed, not nurses within the system that is failing hundreds. Not nurses who are afraid to speak the truth about the power of doctors, unless there are actually many that are not that intuitive or caring when they see abuse of power.
        I spoke to someone (as I am in search for honest help) and this person told me that in Canada, I will not find that ‘hero’, that stands up to other doctors.
        That is an incredibly sad state of affairs. No one should possess that much power.

    • Jana Bartley says:

      Hi Ellison,

      Great comment! The big issue within the healthcare system is that it is very political. When I worked in the public system I tried very hard to advocate for patients and the medical team…I was refused because to provide a safer environment it was going to cost too much money! When it comes to money, money always wins! As private advocates our allegiance is to our clients!

      • Jeanette M. says:

        Hi Jana,

        I see this thread is over a year old. I’m wondering if the authors have gone into private practice? This interests me. Jeanette

      • Leslie Racz says:


        Yes we are in Private Practise now and getting calls daily for help in all areas of health.

      • Leanne says:

        Do you provide Independent Patient Advocacy in Edmonton, AB

        If you can I have a phone number or email address to contact you.


      • Laura says:

        Good morning, this has been an area of interest for me for some time. I would like to consider offering this type of service in Saskatchewan. Would you share with me tips on getting started or would that be a conflict for you?

      • Caroline says:

        Hello Laura
        I’m from Montréal province of Québec. I just receive an article from ctv News which talks of these private patient advocate and I would be interesting of offering this service in Québec. Did you had some answer about how it would be getting started this kind of service here ?


      • Anne Graf says:

        I am interested. I am a nurse looking to help others as I have helped family and friends. Where should I look or who should I contact. Any help would be appreciated.
        Anne McCarthy Graf, BSN,RN,MA, LADC

      • Carmen Cassidy says:

        I work i The health care industry!! as s referral specialist, I see the importance of a private advocate for patients.. this service is needed! I work for a large company, responsible for getting appt from specialists and hospitals for 12 busy physicians.. it is a rather consuming job, trying to facilitate urgent appt to non urgent.. everyone wants to be seen yesterday..

      • Lisa Blake says:

        Have long wanted to work as a private patient nurse advocate in the US. Currently opening a Legal Nurse Consulting Corporation. However, would like to have a branch of the business that focuses on the preventable applications of needing an attorney. As a Critical Care nurse and Cardiothoracic ICU RN, I see the challenges daily from the patient perspective, as well as recognize the limitations of the health care team to be “all things to all patients”. Would love to talk or email regarding thoughts and input.

      • Jennifer says:

        Hi Jana, I’m just wondering if you have your own patient advocacy practice? Would love to know more about it.

        Thanks so much

  • Andrew Appleton says:

    I share the concerns of the authors about equitable access and the future need for standardization. There will always be a potential for patients, especially the elderly, to be taken advantage of. The Ministry and health care system at large will need to be vigilant of this.

    The growth of this industry is indicative of two things. First, our system is complex and offers many different services. Second, we have an older and sicker population who live longer than ever before. To compound the issue, we know that health literacy in the general population is low and physicians do not have adequate time to counsel patients. Payment structures certainly impact this as well (another discussion all together).

    When something is outside our area of expertise we seek advice and potentially hire a professional. I seek advice from a financial advisor on investment strategy. Why would someone not do the same for their health by hiring a patient advocate? There are entrepreneurial folk out there who are clever and quickly adapt to demand in the market place. This is a great example and I expect to run into this more. I see it as a challenge to those of us on “the inside”.

    If preventative care worked perfectly, many of us would be out of a job. Yet this doesn’t stop of from counselling our patients on its merits. Similarly, if our care integration and communication among primary care, specialty care, inpatient and outpatient care, etc. was perfect, this advocacy industry wouldn’t exist to signal to us we are coming up short. They are picking up our slack.

    I think this is something we need to embrace while all focusing on working together to achieve the best results for our patients. Perhaps this is simply another new role, like nurse practitioners were a couple of decades ago, that can help our patients on their journey through the system.

  • Chris Carruthers says:

    The need for these types of services will only grow. Patients need to understand in simple language their medical problems and treatment options. They need an advocate for them as they navigate a very complex and more and more uncoordinated health system especially if they have several chronic diseases. Sub-specialization within all health professions leads to a break down in communication. Patients need to know the right questions to ask when they meet a health professional. Families, particularly those with older sick parents, do not have the time to be with their parents for their encounters of the health system. Many patients will need and should have an advocate in order to get the best care and if not a family member or close friend then they will need to hire someone .

  • donna R says:

    Article covers a few areas of weaknesses in the system. There is also need to address gap or deterioration in how ailments are diagnosed , when health issues fall outside the “normal range” , ie do not fit the regular protocol, people are often left on their own to wander through the system. Overload and old ways do not encourage search for answers. Further , excessively long waiting times create additional problems as health issues worsen and compound over time. Access to timely and better coordinated assessments would cost less in the long run.private specialists might help navigate the old system. Do these services exist ?


Ryan O’Reilly


Mike Tierney


Mike is the Vice President of Clinical Programs at Ottawa Hospital.

Andrew Remfry


Jeremy Petch


Jeremy is an Assistant Professor at the University of Toronto’s Institute of Health Policy, Management and Evaluation, and has a PhD in Philosophy (Health Policy Ethics) from York University. He is the former managing editor of Healthy Debate and co-founded Faces of Healthcare

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