NGOtiate is a Danish consultancy house
We are a rare hybrid and a pioneer in our field
About us
NGOtiate is a Danish consultancy house founded in 2007. We are a rare hybrid and a pioneer in our field:
We help non-governmental organizations (NGOs), including patient organizations and advocacy groups seeking to advance their visibility, (share of) voice, membership profile, membership size, geographical reach, funding and level of influence on e.g. new therapy development. We have 20+ years experience in supporting patient leaders and patient communities reaching related goals. We know what works, and are here to help your organization or community from ‘A-Z’ in addressing its needs and achieving its goals.
We help public and private healthcare organizations, including research education institutions, hospitals and pharmaceutical companies, to establish, accelerate and scale up your patient/user involvement. We have 20+ years of experience in assisting small organizations as well as Fortune 100 companies bring ‘first-in-class’ and ‘best-in-class’ treatments, devices and practices to the market across oncology, virology, immunology, endocrinology, dermatology, rheumatology, gastroenterology as well as common, less common and rare diseases.
We help design and implement alliances between patient associations/networks and R&D-based organizations. ‘Patient / user involvement’ in drug development is no longer a ‘nice to have’. It is a ‘must have’. Related expectations, guidance, and guidance updates are published on an ongoing basis by patient alliances, as well as by approving authorities in both the EU and the US (ie. the EMA and FDA). We help to translate related expectations and guidelines into concrete plans, which build on shared agendas and win-win outcomes.
We pay it forward. We know that patient organizations and communities overall play a critically important role in helping individual patients and affected families cope with and manage severe diseases. This is why we offer our support, free of charge, to individual patients or family members seeking to create a patient/family support network in a disease area where there is none. Our offer includes related know-how on what steps to take, in order to be the change you want to see. It also includes information on where to connect with like-minded people; people who saw the need for a change, and who became that change.
Our services
be the change
Helping patient organizations, advocacy groups and digital communities
- Stakeholder and communication strategies and development of implementation plans
- Design of related digital communication, marketing or fundraising initiatives
- Day-to-day strategic and operational support towards defined goals
- Knowledge of how to partner with research-based organizations, in order to pave way for new medicines development in your area of interest and related match-finding
Helping research-based organizations
- Introduction to strategic patient engagement and related benefits principles, practice, guidelines and critical success factors
- Patient engagement strategy development – corporate level, portfolio level or compound specific
- Applied strategic patient engagement/increase specific or overall performance across and beyond the value chain
- Development of internal essential infrastructure (including or excluding related training by subject matter experts)
HOW WE ARE DIFFERENT
the partnering paradigm
Disease experience experts (aka ‘patients’) are increasingly involved in medicines R&D, advising on, for example, the design of clinical trials and related strategies, as well as in the development of patient education and support programs.
While truly collaborating with key patient opinion leaders and their communities at the very early stages of medicines R&D is not exactly ‘business as usual’ for pharma, the expectation and ask from the patient communities, however, is crystal clear: Engage us and our communities from the get-go.
This ask is the foundation of e.g. the EUPATI initiative, as well as backed by the regulators in the EU and US, who in 2020 alone issued three new guidance documents to R&D-focused organizations, providing directions on where and how to ensure that key decisions are made and bolstered on primary insights, advice and evidence from patients.
Sources: Eupati.eu, fda.gov and EMA Europe
The value of strategic patient engagement
- Optimizing performance across value chain and ultimately end-user products (ref 1,6)
- Positive effect (e.g. financial effect) on clinical trial recruitment and retention (ref 2,3,4)
- Opportunity for researchers to learn from patients as disease experience experts (ref 6)
- Challenge the set way of thinking – often leading to improved research design, delivery, and dissemination (ref 6)
- Wider impacts of a changed innovation, research culture and agenda (ref 5)
Sources:
1: Wicks P, Richards T, Denegri S, Godlee F. Patients’ roles and rights in research.
2: Crocker Joanna C, Ricci-Cabello Ignacio, Parker Adwoa, Hirst Jennifer A, Chant Alan, Petit-Zeman Sophie et al. Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis
3: Boivin Antoine, Richards Tessa, Forsythe Laura, Grégoire Alexandre, Esperance Audrey, Abelson Julia et al. Evaluating patient and public involvement in research.
4: Levitan, Getz et al. 2018: Assessing the Financial Value of Patient Engagement 5 Staley, K. “Researchers don’t know what they’re missing”—the impact of patient involvement in research
6: Vat et. al (2019) Evaluating the “return on patient engagement initiatives” in medicines research and development
the value chain
The 'When' aspect - Applied strategic patient engagement
(Key examples)
