RAND/PPMD Patient-Centeredness Method Publications

Giving Patients a Voice in Medical Guidelines

Clinical guidelines are the user manuals of modern medicine. They can dictate insurance coverage and help hospitals set quality standards. Yet they often lack the perspective of those who care the most about good treatment: patients and their caregivers. Researchers are working to change that.

Why Is It Important to Provide High-Quality Feedback to Delphi Participants?

Participants in Delphi studies change some of their responses after group feedback and discussion. The results support previous findings that suggest that even modest changes between Delphi rounds may affect the final study findings.

Dmitry Khodyakov, Christine Chen

The RAND/PPMD Patient-Centeredness Method: A Novel Online Approach to Engaging Patients and Their Representatives in Guideline Development

The RAND/PPMD Patient-Centeredness Method allows patients and their representatives to provide input in clinical practice guidelines.

Dmitry Khodyakov, Brian Denger, et al.

Using an Online Modified-Delphi Approach to Engage Patients and Caregivers in Determining the Patient-Centeredness of Duchenne Muscular Dystrophy Care Considerations

Clinical guidelines that meet patient-centeredness criteria are likely to be consistent with the preferences, needs, and values of families dealing with Duchenne muscular dystrophy.

Dmitry Khodyakov, Sean Grant @GrantSeanP, et al.

Participant Experiences with a New Online Modified-Delphi Approach for Engaging Patients and Caregivers in Developing Clinical Guidelines

Participants were satisfied with an online approach to participating in guideline development.

Courtney Armstrong, Sean Grant @GrantSeanP, et al.

Patient and Caregiver Perspectives on Guideline Adherence: The Case of Endocrine and Bone Health Recommendations for Duchenne Muscular Dystrophy

The purpose of this study is to explore factors that are likely to affect patient/caregiver adherence to endocrine and bone health recommendations for Duchenne Muscular Dystrophy (DMD).

Brian Denger, Kathi Kinnett, et al.

Practical Considerations in Using Online Modified-Delphi Approaches to Engage Patients and Other Stakeholders in Clinical Practice Guideline Development

This article's objective is to illustrate how to use an online modified-Delphi approach to engage patients and their representatives during different stages of clinical practice guidelines development.

Dmitry Khodyakov, Sean Grant @GrantSeanP, et al.

Engaging Patients and Caregivers Managing Rare Diseases to Improve the Methods of Clinical Guideline Development

A new, online method to engage more patients and caregivers in developing clinical guidelines will be created and then tested, using Duchenne muscular dystrophy as an example.

Dmitry Khodyakov, Sean Grant @GrantSeanP, et al.

Practical Considerations for Using Online Methods to Engage Patients in Guideline Development

This study developed practical considerations for including large, diverse, and geographically dispersed groups of patients in clinical practice guideline development through online engagement methods.

Sean Grant @GrantSeanP, Glen Hazlewood, et al.