Prioritizing Patient Engagement in the Updated CDC Contraceptive Guidelines

Background:

Contraceptive use is a crucial aspect of public health, with a significant positive impact on maternal and child health. The U.S. Medical Eligibility Criteria (MEC) for Contraceptive Use and U.S. Selected Practice Recommendations (SPR) for Contraceptive Use were developed by the Centers for Disease Control and Prevention (CDC) to provide evidence-based recommendations to help healthcare providers counsel people on contraceptive methods. During the 2023 CDC Contraceptive Use Guideline Development Meeting, healthcare providers, medical researchers, and patient representatives shared their perspectives on contraceptive use topics to inform updates to these guidelines. A priority was to integrate the patient perspective into the meeting and guidelines, with a goal of increasing trust between patients and providers and promoting patient-centered care.

Program background:

In support of this goal, CommunicateHealth (CH) partnered with CDC and contraceptive subject matter experts (SMEs) to:

• Conduct an environmental scan on patient involvement strategies, best practices, and barriers
• Facilitate listening sessions with 18 patient representatives about their experiences, values, preferences, and information needs related to contraceptive choice
• Train 2 patient representatives to participate in the guideline development meeting and speak anecdotally about their contraceptive care experiences, values, and preferences

Evaluation Methods and Results:

CH reviewed and thematically organized information from the environmental scan, listening sessions, patient representative insights, and the guideline development meeting. Themes included:

• “Safety” represents more than what’s captured in the MEC — it includes topics like bodily changes, mood changes, trauma-informed care, and emotional safety
• Patient representatives considered other values and preferences as important as safety for selecting a contraceptive method — especially when multiple methods are considered safe
• Patient representatives spoke about experiencing discomfort and limited empathy from providers and said they wanted providers to engage them in shared decision-making and human-centered care

Based on this information, CH collaborated with SMEs and CDC to develop recommendations including:

• Update the guidelines to follow best practices in plain language, inclusive language, and design; reflect patients’ perspectives related to safety; and provide more details about contraceptive methods
• Continue to engage patient representatives in guideline development — including leveraging patient stories to center the patient voice
• Conduct formative audience research to better understand values and preferences around contraceptive services from diverse range of patients
• Change the format and goals of the guideline development meeting to better support patient engagement

Conclusions:

Patient engagement in contraceptive guideline development is highly valuable for increasing transparency, creating patient-centered recommendations, and building trust between patients and providers. Conducting research with patient representatives and including their perspective throughout the process should be considered for contraceptive guidelines as well as other medical guidelines.

Implications for research and/or practice:

Public health, government, and healthcare organizations should explore multiple methods of patient engagement in guideline development — like utilizing community advisory boards or hiring trusted community representatives — and discuss strategies to reach marginalized groups. Patient engagement should leverage personal stories to empower underrepresented voices and motivate guideline developers to incorporate the patient perspective. Audience research should explore the impact of patient engagement on building trust, combating misinformation, and improving health outcomes.