The brief: Transform measurement in medicine. PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition, and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and non-profits develop more effective products, services and care. With more than 550,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 100 peer-reviewed research studies.

Our R&D team is embarking on new avenues of research combining the patient-reported experience of disease with biological data, objective sensors, and machine learning. As a Director of Outcomes Science focused on patient-reported outcomes you will use your scientific leadership, analytic skills, and experience to conceive, design, and execute high-quality health outcomes research projects in collaboration with our business, consumer-centered design, and computational biology teams. In addition to being an expert researcher, you will succinctly communicate the key findings to diverse audiences including scientists and senior business executives. As a leader in the organization, you will build a team and a strategy to help transform measurement in medicine. As a member of the PatientsLikeMe team, you will share lessons learned from each project to help us improve our platform, enhancing the patient’s ability to find other patients who can inform, support, and educate each other.

Responsibilities

• Put patients first in everything that you do
• Take responsibility for the continued development and validation of our “Thrive” measurement system, which aims to generate dynamic PRO-like scores for symptom burden, disease impact, and self-perception which allow individuals to better manage their disease and for researchers to make novel biological discoveries
• Manage a portfolio of work in psychometric and clinical validation across multiple conditions including internal work upgrading our patient platform and external collaborators
• Translate requirements from customers (external and internal) and develop and execute methodologically rigorous research designs to answer their questions and solve patients’ problems using the data gathered in our longitudinal registry
• Lead meetings with prospective collaborators, explaining our capabilities and methods as well as developing study goals/requirements and turning these into robust proposals
• Supervise and oversee concept elicitation, qualitative, and quantitative analyses in the context of the existing scientific literature and design studies that clearly answer research objectives
• Work on cross-functional teams (health data integrity, clinical research, consumer-centered design, business) to produce research insights and effectively communicate with the client/stakeholder throughout the research process
• Participate in preparing and delivering client presentations
• Supervise research scientists, research assistants, and consultants working on projects
• Develop a publication strategy including conference presentations, posters, and peer-reviewed journal articles
• Participate in the scientific literature as a peer reviewer and thought leader

Requirements

• Master's, PhD, or MD-level education in the field of psychology, epidemiology, psychometrics, statistics, clinical research, public health, or related field
• Expertise in multiple academic and/or commercial patient-reported outcomes development projects as lead decision-maker. International reputation a plus
• 7+ years of post-training experience in human clinical research; demonstrated experience in research design, data collection, managing data sets, qualitative data analysis, and psychometrics.
• Preferred – Experience combining patient outcome data with biological data (e.g. genetics, proteomics, immunology, objective sensors, medical devices, metabolomics, lab values)
• A record of peer-reviewed publications related to patient-reported outcomes measures as first or senior author.
• Editorial board experience a plus Commitment to excellence in managing teams and continuing personal development
• Experience working directly with commercial and/or academic sponsors in identifying and conceptualizing patient reported outcome projects
• Proficiency with statistical software programs such as SAS, R, Stata, or SPSS Industry experience in pharmaceutical outcomes research, epidemiology, HEOR, or data informatics
• Local to the Boston/Cambridge area and able to be onsite daily, up to 10% travel
• You should become very familiar with our vision, our website, and our research before applying; check out our publications, YouTube presentations, and our blog. Learn more about life at PatientsLikeMe here.
• In your cover letter, please highlight your best work, what you can bring to the team, and why you are interested in PatientsLikeMe.