Patient Engagement

Patients are our purpose
Hear My Voice™ is our promise

The importance of the patient voice in the development of treatments and health services cannot be overstated. We believe that active and ongoing patient engagement will result in more effective and beneficial treatments, and ultimately help improve patient outcomes and overall health. Hear My Voice enshrines our commitment to weaving the voice of the patient into the fabric of new treatment development.

Our Patient-focused Solutions

Solutions informed by patients help drive better outcomes. Our patient-focused services support a range of needs across the entire medicine development pathway.

Patients should not only be thought of as only candidates for clinical trials, but should instead be included in the design of drug discovery programs. This can help to ensure that study protocols are not overly burdensome to patients, and that treatment benefits are properly assessed. The result of this shift in thinking has shown that biomarkers and surrogate endpoints may not always be as meaningful to patients as other metrics, such as health-related quality of life or impact on daily activities. By putting patients at the center of research, we can help you:

Improve trial design/protocols, recruitment, and retention by better understanding barriers to participation and adherence to study procedures
Identify, modify, and develop new clinical outcomes assessments (COAs) to document treatment benefit from the perspective of patients
Interact with key regulatory bodies (such as the FDA and EMA) to ensure the voice of patients is adequately captured in clinical trials, which may also form the basis of labelling claims based on patient-centered endpoints
Conduct interviews with patients while they are in clinical trials to document their burden of disease and diagnostic journey (entry interviews) and the level of change they experienced while on treatment throughout the trial (exit interviews)

The Power of the Patient

In this paper, we aim to define the different types of burden of illness studies and highlight the importance of qualitative burden of illness studies as complementary to patient reported outcomes data, and as separate stand-alone research projects that can further support HTA committees in their decision-making.

Whitepaper Jul 14, 2022

Regulators and health technology assessment bodies are increasingly embracing patient experience data and real-world evidence, and this has helped to incorporate the voice of patients, their families, and caregivers into product development. Our teams have deep and diverse experience in:

Patient and caregiver market research
Identifying the burden of disease
Patient needs assessment
Patient profiling and segmentation
Patient communications evaluation
Social media listening, adhoc and syndicated reports with Sonar
Patient advisory boards and councils
Patient experience data planning
User experience and design optimization
Real-world evidence design and generation

We use a variety of market research methodologies to amplify the patient voice and generate relevant insights to solve your business issue, including quantitative and qualitative methodologies, self-ethnography and observational research, social media listening, advisory boards, and online forums.

Patient Insights Across Rare Diseases: Forging better partnerships through collective advocacy

Whitepaper Mar 17, 2022

A clear understanding and mapping of the patient journey can provide insight into the lived experience of those with a disease, validate the diagnostic and treatment management processes, and identify the primary stakeholders and key-decision influencers. We can help you design the patient journey research needed, whether it’s a tactical patient flow map, buying process, or an experiential journey complete with the clinical, functional, and emotional impact of living with a disease.

We have deep experience creating and conducting:

Patient experiential journeys
Patient treatment flows
Identifying patient and HCP relationship dynamics and disconnects
Treatment adherence and experience research
Patient support program development and optimization research

Successful development and launch of a medical innovation requires an ecosystem of stakeholders, including patients, to develop needs-based patient engagement programs. We can help you develop a patient-centric vision and agile, innovative strategy and robust plan for your product. Our patient engagement experts can help you with:

Patent stakeholder engagement strategy
Point-of-care engagement strategies
Patient scientific platform, messaging, and lexicon development
Patient publication planning
Multi-stakeholder advisory councils/panels
Patient advocacy development

Disease-Modifying Treatments in Rare Disease Bring Hope and Optimism – is that Enough to Activate Patients?

View Apr 27, 2022

At launch and beyond, systematic patient involvement can help ensure effective and impactful adoption and use of medical innovations, improve the ongoing benefit-risk assessment, and identify possibilities for further development. Critically, ongoing engagement of patients and patient communities ensures that their needs are reflected in research program design, and supports adoption and lifecycle management. Patient advocates and associations are also important partners in the development of medicines, especially in the post-launch phase to support regulatory assessment, community engagement, and education. We can help with:

Patient education
Patient communications and publications
Marketing support
Multi and omni channel strategy, including social media
Digital health strategy and applications
Patient support programs
Patient advocacy development and partnerships
HTA assessments and engagement
Metrics development and project assessment
Marketing campaigns grounded in behavioral science expertise

The Challenge for Patient Advocacy: Moving from Storytelling to Action

We sat down with Kimberly Richardson, breast and ovarian cancer survivor, Founder, Black Cancer Collaborative, and Lumanity Expert Patient Council member, to talk about her experiences as a patient advocate and how to optimize advocacy and pharma partnerships.

View Sep 1, 2022

Patient Center of Excellence

Lumanity’s Patient Center of Excellence brings together scientists, researchers, communicators, strategists, and change makers from across the organization to weave the patient and caregiver voice into everything we do. The Center of Excellence allows us to share best practices, drive innovation, and ensure we are providing our clients with industry-leading patient engagement and partnership. We believe this not only reflects our commitment to patients and to the advancement of patient-focused research, but that creating a dedicated forum for this work will lead to better treatments and improved outcomes.

Patient Council

Our Patient Center of Excellence has assembled a dedicated, patient-focused council that meets regularly to advise our teams on patient-related client questions, industry issues, and best practices. The Patient Council is comprised of patient advocates with rare diseases, chronic diseases, and cancer survivors, as well as digital opinion leaders and innovators from around the world. Each Council member has a unique perspective and expertise to provide lived patient perspectives and long-term patient viewpoints to help ensure drug development and patient support are fit for purpose.

Learn how you can benefit from the learnings and insights the Council shares.

Lumanity seems to be very mission driven, not alike many of the agencies out there which found patient engagement just to be a fashionable and lucrative business. There is too much talk and not enough walk out there, and you seem really determined to make a difference.

Greame Johnston RA patient, Lumanity Patient Bureau, and PFMD board member

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