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Patient Advocacy Group Creates Patient Education Tools for MS

A new patient education tool will support shared decision-making for patients with multiple sclerosis.

patient education

Source: Thinkstock

By Sara Heath

- Patients living with multiple sclerosis (MS) can now access a comprehensive set of patient education materials geared toward enhancing patient activation.

The new set of patient education tools, called MS Path 2 Care, are sponsored by patient education advocate Can Do MS and Sanofi Genzyme.

The tools specifically look to improve shared decision-making in healthcare and including the patient as an important care team member. Patients must have ample information about their own medical conditions, treatment options, and potential side effects to become a member of the care team and to actively participate in shared decision-making. These patient education tools aim to accomplish those goals, according to Anne Gilbert, the Director of Programs at Can Do MS.

"At Can Do MS, we believe that it is critical for people with MS to be proactive and engaged in managing their own care,” Gilbert said in a statement. “That is why we are so excited by the launch of MS Path 2 Care, which provides information and tools that can help address a wide range of challenges from MS.”

Can Do MS consulted with key healthcare stakeholders including MS experts, patients living with MS, and patient advocacy groups. Together, these groups identified key strategies for engaging patients in care, supporting patient-provider relationships and communication, and learning objectives.

The patient education materials include four modules developed in partnership with the Society for Participatory Medicine, including:

  • Understanding your healthcare team: This module notes the importance of building a broad healthcare provider team for caring for MS and other comorbidities.
  • Partnering with your healthcare team: This module explains how patients can lean on their healthcare providers as important teammates in their care journey.
  • Navigating the healthcare system: This module focuses on helping patients explore other parts of their healthcare, MS treatment, and how care will impact personal patient finances.
  • Strengthening your support partnership: This module underscores how a strong support system of family and friends can enhance care quality.

Each module includes educational and informative materials, as well as personal testimony from patients who suffer from MS.

Ultimately, these patient education materials work to integrate the patient as a part of the care team. There are critical insights and perspectives that patients can offer to a care encounter, and patients must be empowered to share that expertise, according to Stephanie Buxhoeveden, MSCN, MS, FNP-BC.

"The patient and the healthcare provider are both experts in MS; they are partners in care,” said Buxhoeveden, who is an MS patient. “The provider is an expert in the science, and the patient lives with the disease every day. Having been on both sides of the conversation, I know that each has a unique and complementary perspective, so it is vital that developing a care plan is a collaborative effort. From this standpoint, a resource like MS Path 2 Care is so valuable because it provides MS patients with the tools they need to start a constructive dialogue with their healthcare providers and empowers them to take charge of their own disease journey."

Can Do MS launched the patient engagement tools as a part of National MS Month, an awareness event that highlights the nearly 400,000 individuals who suffer from MS.

Patient education is an important part of any chronic disease management strategy. Patient education leads to more patient empowerment and shared decision-making. When patients participate in their own care and help make care decisions that align with their own values, outcomes improve.

Shared decision-making can decrease patient anxiety about care, according to a 2016 study published in the British Medical Journal. Shared decision-making and patient education also result in fewer preventable hospital readmissions.

The logic stands that patients who know more about their own health can participate in treatment decisions and feel empowered during that process. Patient education can also empower patients to take care of themselves in between care encounters.

As healthcare professionals continue to face calls to improve patient engagement and participation in care, they will need to find effective paths toward better patient education.

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