breast cancer care

Heather Williams, right, sits with Dr. Ardythe Taylor, founder of Breast Cancer Support Care. (Colleen Underwood/CBC )

Cancer, diabetes and back pain are just some of the most common chronic conditions facing Canadians. For patients, knowing how and where to get help can be a mystery. There's a new type of health care worker who just might save patients some aggravation and the system a lot of money.

They're called patient advocates.  Some have clinical backgrounds.  Among the small but growing number of patient advocates are retired physicians as well as nurses.  Some have no clinical training whatsoever, learning case by case how to advocate for patients.  In that sense, they're like the smart family member or friend who helps the patient to navigate through a complex choice of treatments, and gains knowledge and experience as they go.  

I have met advocates who started out helping their parents chart a course through the system, got good at it, and turned that expertise into a business advocating for others.

Patient advocates work for private companies with names like Nurse-On-Board based in Ottawa and Integrity Health Consultants based in Toronto.  In general, they work outside the publicly funded provincial health care system.  That means you pay as you go for their services.  Depending on the problem, you might need anything from an hour appointment to several visits a week for a month, six months and even a year.  The cost ranges from $100 or 150 an hour to a flat fee for helping the patient through a particular health problem. Some of the higher end advocates working in the U.S. charge $300 an hour (U.S. dollars) or $1500 a day plus expenses.

What do patient advocates do to earn that kind of money? It varies depending on what ails the patient and their social circumstances.  First and foremost, patient advocates listen carefully to your story.  That way, they can help you navigate the system.  They help you understand what's wrong with you and what your options for treatment are in language easy to understand. They help you find the right specialist for your condition. Some will help you build a team of health providers to look after various aspects of your condition.  

They know when you've gotten the right advice and when to ask for a second or even a third opinion.   Because doctors can be intimidating, a patient advocate accompanies you to the appointment.  If you need it, they visit you at home.  They help create your health record and keep it up to date.

Critics say we wouldn't need patient advocates if people like me did their jobs properly. But that's not the whole story.  Health care is very fragmented.  The patient has a family doctor, several specialists, a registered dietician, a physiotherapist and a pharmacist.  They might receive care in three or four different places  each with different appointment booking systems and different electronic health records.  In a system like that, patient advocates are essential to keep clients from falling through the cracks especially when the patient has no family members to help out.  And even when family members do provide care, it's a lot to ask that they take unpaid time off work to learn the ropes of the system. Just making sure the patient takes their medications properly is a huge chore.

If patient advocates are so essential, you can make a strong case that the public system pay for them. There are publicly funded nurse navigators in hospital and provincial cancer programs that function very much like advocates.  Case managers that work for Community Care Access Centres and other home care agencies help patients to navigate through the many options for community care and help them apply for a bed in a long term care facility. We're starting to see navigators for other complex diseases like heart failure.  

I think patient advocates should be available to anyone with chronic illnesses that are too complex for patients to navigate on their own.  When patients have complex chronic illnesses, they should be assessed to see if they can handle the complexities of navigating the system - and if they can't - to see if they have a family member or friend who can act on their behalf.  If not, then I think the system should provide a patient advocate to help them.

It would cost money, but could save a lot of dollars wasted when patients get readmitted to hospital because of everything from not taking their medications properly to not being able to navigate the system. 

The money saved down the road would more than pay for it.