Being a patient can be confusing and overwhelming. There can be a lot of new information to absorb at a time when patients are not feeling their best. Decisions are often necessary and the implications of those choices may not be clear. Recovery can involve following detailed instructions or making life changes that may be hard to adopt.
Over the last decade, there has been a shift in the culture of health care to place greater emphasis on patient engagement to improve care and outcomes as well as improve the patient experience. Engaging patients helps them become active participants who let providers know when they need more information, share in making decisions about their care and have a greater sense of investment in their recovery or management of chronic conditions.
“Engagement has always been part of our front-line patient care,” said Bonnie Bowes, Director of Quality, Risk Management and Privacy at the Ottawa Heart Institute. “And for many years, we have consulted with patients on new materials or educational classes to make sure the content is understandable and meets their needs.”
The Heart Institute is now taking additional steps to hardwire patient engagement at the organizational level by involving patients in planning and policy reviews for both clinical and research activities. But what does patient engagement really mean?
Engagement on the Front Line
For more than 30 years, the Ottawa Heart Institute Patient Alumni has provided a way for patients to say informed about heart disease, treatment and prevention, and to stay involved with and support the work of the Heart Institute. (See “Helping Patients Stay Connected and Informed”)
For Jean Bilodeau, President of the Patient Alumni and co-chair of the Institute’s Patient Engagement Committee, “The ultimate thing is to make sure patients are involved in managing their health. This means being fully aware of all the treatment options they have—options for procedures, options for medications. We want to be sure they know who to ask and that they feel empowered to do so.”
This view is echoed by Lorraine Montoya, advanced practice nurse for Heart Institute’s Transcatheter Aortic Valve Implantation (TAVI) Program and developer of several of the Institute’s patient guides and other patient education materials.
“It’s important that patients have the opportunity to make it clear what they hope to achieve with their care,” she said. “Recently, a patient told me that she would not have open heart surgery to replace her aortic valve even though medically it may be a better option than the less invasive TAVI procedure. She has her own unique concerns and goals that influence her treatment choices and which must be part of the dialogue.”
“It’s a discussion,” continued Montoya. “She is very engaged in her care and she felt comfortable letting us know her priorities. We added our knowledge and experience to the conversation and, together, we reached a treatment decision that worked for her particular circumstances and was agreeable to everyone. She’s now more informed and feels more in control. And she’s more invested in her outcomes.”
Ways to Play an Active Role in Your Care
- Bring someone with you to appointments.
- Read any patient materials that are available.
- If you have questions, don’t be afraid to ask.
- Find out how to get more information or clear up anything you don’t understand.
- Know the warning signs for your condition, and don’t hesitate to get help if you experience them.
- Keep your care team aware of all medications and supplements you are taking.
- Let your doctor know if a treatment option might affect an important part of your life.
- Find out what getting better means, and make it clear what you want getting better to look like.
A common concern of health care providers is whether patients are following the instructions they have been given for recovery or for managing their chronic condition. Are they taking their medications properly? Are they sticking to their modified diet or physical activity recommendations? The answer has a direct bearing on their outcome and future health.
In fact, a study presented earlier this month at the American Heart Association’s Quality of Care and Outcomes Research conference found that patients with atherosclerosis who had good communications their healthcare providers were 52% more likely to be taking their medications, 41% less likely to go to the emergency room and half as likely to report poorer outcomes.
“Engaging patients makes them part of the care team,” explained Montoya. “It’s hard to share in the decision making about your health if you don’t really understand your options, so patient education is essential. After that, interaction, dialog and clarifying expectations are the priorities.”
Bilodeau also emphasized that engagement has to extend beyond the patients themselves. “Our definition of the patient includes the patient, family members and caregivers. The caregivers are critical to this,” he said.
It was input from family members that led to the recent development of a pamphlet to help prepare families for what they will see when they visit a patient in the intensive care unit. Feedback had shown that some family members were upset to unexpectedly see a loved one intubated and hooked up to various monitors and life support devices.
Keeping patients engaged while they are at home is an ongoing challenge. Support groups and the Patient Alumni help with this, as does the Heart Institute’s Telehome Monitoring Program for patients with chronic conditions such as heart failure. The program uses automated follow-up phone calls over several months. These calls act as reminders for patients and give them an ongoing sense of connection to the Heart Institute. If red flags are triggered by patient responses, a nurse contacts them to better understand and address the issue.
Engagement Across the Heart Institute
The Heart Institute is working to formalize policies and processes to make sure the culture of engagement extends to all aspects of the organization. Committees for both clinical care and research include patient representatives who identify gaps in patient information, suggest materials to be created and have input on relevant Heart Institute policies and plans.
As Bowes explained, patient representatives are also closely involved in the development of the Institute’s Quality Improvement Plan and Patient Engagement Framework. Other products in the works include patient decision aids to address treatment options such as receiving a mechanical heart valve versus a tissue valve. These aids will help patients understand the implications of these choices not only for their health, but also for their lifestyle and caregivers.
“There is good evidence that patient engagement impacts hard outcomes, like improved heart function, subsequent heart attacks or hospital readmissions,” said Bowes. Just as importantly, engagement also affects patient-reported measures such as whether treatment made them feel better or whether they are better able to do the things they want to do. For patients, these day-to-day quality of life factors are as important as anything else.