“Patient engagement” is a concept that first appeared around the year 2000 in the United States and is now a growing movement in many countries, including Canada. The core idea is very simple: the patient voice matters.

Dedicated Osteoporosis Canada volunteer Christine Thomas is one of those voices. She not only lives with osteoporosis, but she is also an author and an advocate for meaningful patient involvement in disease research and management.

Christine’s experience is grounded in her volunteer roles with Osteoporosis Canada’s patient group COPN, and the Institute of Musculoskeletal Health & Arthritis (IMHA) of the Canadian Institutes of Health Research (CIHR), where she is a Patient Engagement Research Ambassador. 

“With meaningful patient engagement, we patients are no longer the passive recipient of decisions made by others. We become active participants in shaping those decisions.”

Christine adds that “patient” here means caregivers and family members as well as the person living with the disease — in other words, all the people directly affected by its impact.

Types of Patient Engagement

There are two main ways to become engaged as a patient.

The first is with a research project, as research used to be generally carried out on patients – but not with patients. Now, patient partners can help set priorities, develop research questions, conduct some of the research, and participate in sharing the results. Patient engagement leads to more relevant research priorities and recommendations. For example, Christine is one of the patient partners working on the update of the Osteoporosis Canada Clinical Practice Guidelines for the diagnosis & management of osteoporosis in Canada. 

The second way to engage is for personal benefit as more and more institutions offer an online patient portal. For example, The Ottawa Hospital has MyChart – an online portal which gives patients a tool, allowing them to take an active role in their own health care —including tracking appointments, visiting summaries and test results, and then using this information to help shape their daily behaviour and prepare for future appointments. These portals which drive patient/provider engagement are an important first step towards shifting healthcare from a reactive model to one that embraces proactive and preventative healthcare at the primary level.

Ways to Engage

Would you like to raise your voice and be more engaged? Here are some suggestions:

• Watch out for appropriate research projects and consider applying to take part.
• Join any patient portals being offered by your own healthcare institutions and make active use of their opportunities.
• Consider sharing your own story with other osteoporosis patients. You can submit your story on the Osteoporosis Canada website here.
• Join a support group about how to live well with osteoporosis and to begin networking with others. Learn more here.
• Learn about the IMHA here.

Christine Thomas knows the benefits of patient engagement firsthand.

“My voice matters. Your voice matters. Every patient’s voice matters.”

Whichever way patients engage, they benefit. They learn more, do more and feel empowered. Engaged patients make better decisions for themselves and they help researchers make better, more relevant decisions that benefit others as well.

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Credit: COPN, the Canadian Osteoporosis Patient Network is the patient arm of Osteoporosis Canada, a national network of people living with osteoporosis.

If you are on medication for osteoporosis, are you ever tempted to stop taking it?

If your answer is yes, you are not alone. Studies indicate that especially for those with chronic conditions such as osteoporosis, many patients do not take their medication as directed or for as long as they should.

Osteoporosis is a growing problem worldwide, with the greatest burden resulting from broken bones. There are several treatment options available that are effective in reducing fracture risk, but in order to see the benefit, patient adherence is required.

Like other chronic diseases, especially those with no symptoms, adherence to osteoporosis therapies is poor. Some articles have suggested that in general, rates of non-adherence can be as high as 50%. In a recent study that looked at people on Ontario Drug Benefits, only 63% of patients given a bisphosphonate prescription were still taking it after one year, and this dropped to 46% after two years.

Why don’t people take their medications as prescribed? Possibilities include:

• Memory loss. The individual forgets when and how to take the medication.
• Lack of symptoms.  The need for and benefits of a medication are not felt. This is true of osteoporosis, which is often called “the silent thief” because there are no symptoms unless and until one has fractured.
• Side effects. The individual may experience side effects or fear the potential for immediate or longer-term side effects in the future.
• Uncertainty about the benefit of drug treatment or preference for a “natural” approach.
• Lack of understanding of the disease and the value of medication.
• Poor communication between the patient and their healthcare provider.
• Cost of medication.
• Difficulty following the instructions for use.
• Complexity of treatment, especially if the patient has multiple conditions requiring multiple drug therapies.

Consequences

Not taking your medication as prescribed has far-reaching consequences.  Poor adherence means that the drug will not be as effective and health will decline. In addition, medical costs will rise.

In 2009, it was estimated that non-adherence cost the US healthcare system $290 billion. There is little data available for Canada, but in 1995 the cost of medication non-adherence was estimated to be $7 – 9 billion annually.

Patients who do not take their prescribed medication do not receive the benefits of that medication. Patients who only partially follow their medication regime may receive some benefit but are also at risk for serious complications. Patients who do not stick with their treatment plan are more likely to end up in hospital. Studies suggest that for people taking bisphosphonate therapy for osteoporosis, those that take 75% of their medication do not have the same reduction in fracture risk as those who take the medication as prescribed 100% of the time; and when patients take only 50% (or less) of their pills, no benefit is seen (it is the same as not taking any bisphosphonate).

Over 80% of fractures in people over 50 are due to osteoporosis. There are effective medications available to reduce the risk of fracture from 30 – 70% provided they are taken properly and 100% of the time. If you are at high risk of fracture, it is very important that you take your osteoporosis medication regularly and as recommended.

Addressing your concerns

If you have concerns about treatments or medications, you should speak to your doctor – and you should ALWAYS speak with your doctor before making any changes to your medications. 

Together, you can work out how best to handle any problems. This will help ensure that you have the most appropriate therapy strategy possible for your condition and receive the greatest possible benefit from it.

Learn more about drug treatments to treat osteoporosis here.

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Credit: COPN, the Canadian Osteoporosis Patient Network is the patient arm of Osteoporosis Canada, a national network of people living with osteoporosis.

If you buy drugs online, you may be putting your health at serious risk. This is especially true if you order prescription drugs without being examined in person by a healthcare practitioner.

A simple Internet search will turn up hundreds of websites that sell drugs. Some Internet pharmacies are legitimate, but many offer products and services that are dangerous. Some sell drugs that are not approved for use in Canada because of safety concerns. Some take advantage of people desperate for relief by offering “miracle cures” for serious illnesses like cancer. Many offer prescription drugs based on answers to an on-line questionnaire. These sites tell you they will save you the “embarrassment” of talking to your doctor about certain prescription drugs, such as Viagra, or drugs to prevent hair loss, or promote weight loss. What they do not tell you is that it is dangerous to take a prescription drug without being examined in person and monitored by a healthcare practitioner to make sure the drug is helping you.

Risks Associated with Buying Drugs Online

Buying drugs from Internet pharmacies that do not provide a street address and telephone number may pose serious health risks. You have no way of knowing where these companies are located, where they get their drugs, what is in their drugs, or how to reach them if there is a problem. If you order from these sites, you may get counterfeit drugs with no active ingredients, drugs with the wrong ingredients, drugs with dangerous additives, or drugs past their expiry date. Even if these drugs do not harm you directly or immediately, your condition may get worse without effective treatment.

If you order prescription drugs without being examined and monitored by a healthcare practitioner, you may be misdiagnosed, and miss the opportunity to get an appropriate treatment that would help you. You may also put yourself at risk for drug interactions, or harmful side effects that a qualified health professional could better foresee.

Buying drugs on the Internet may also pose financial risks. In some cases, the product may not be shipped at all, or if it is coming from another country, it could be stopped at the border by Canadian authorities.

The Status of Internet Pharmacy in Canada

If you have questions about whether an Internet pharmacy is legitimate, contact the licensing body in your province or territory.

Minimizing your Risk

Do not take any prescription drug that has not been prescribed for you by a healthcare practitioner who has examined you in person.

Do tell your doctor and pharmacist about all of the health products you take, including vitamin and natural health products, as well as prescription and over-the-counter drugs. They need this information to assess and advise you about potential side effects and drug interactions.

If you decide to order drugs on line:

Do not do business with a website that:

• refuses to give you a street address, telephone number, and a way of contacting a pharmacist;
• offers prescription drugs without a prescription, or offers to issue a prescription based on answers to an on-line questionnaire;
• claims to have a “miracle cure” for any serious condition; or
• sells products that do not have a DIN (Drug Identification Number) issued by Health Canada.

Do make sure you are dealing with a Canadian-based website that is linked to a “bricks and mortar” pharmacy that meets the regulatory requirements in your province/territory. Finally, if you have a question or complaint about therapeutic drug products purchased on line, call Health Canada’s toll-free hotline: 1-800-267-9675

Health Canada’s role

Health Canada regulates therapeutic drugs in Canada through a rigorous licensing process, which includes an extensive pre-market review and the ongoing post-market assessment of a drug’s safety, effectiveness and quality. As part of this process, Heath Canada conducts risk/benefit assessments, monitors adverse reactions, and communicates information about risks to health professionals and the public. All drugs approved for sale in Canada have an eight-digit Drug Identification Number (DIN). The DIN assures you that Health Canada has assessed a drug, and considers it safe and effective when used as directed on the label. The DIN also provides a way to track adverse drug reactions.

Health Canada licenses and conducts regular inspections of companies that manufacture, import and/or distribute drugs. In addition, Health Canada investigates complaints related to the sale or use of therapeutic drugs, including complaints about websites that sell drugs, and takes action where appropriate. Also, Health Canada works with the Canada Customs and Revenue Agency to control the illegal entry of prescription and over-the-counter drugs. Individual Canadians are allowed to import a three-month supply of therapeutic drugs, subject to a number of restrictions.

©All Rights Reserved.  Buying drugs over the internet.  Health Canada, 2012. Adapted and reproduced with permission from the Minister of Health, 2022.

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Credit: COPN, the Canadian Osteoporosis Patient Network is the patient arm of Osteoporosis Canada, a national network of people living with osteoporosis.