We know that data is key to effective, powerful advocacy. Patients and carers are at the forefront of the work and mission of patient advocacy organisations, and data not only helps patient organisations to better understand patients and carers and provide the support that they need but is also a critical tool in advocating for better and fairer care and treatment for patients.
Additionally, key stakeholders are now recognising the value and importance of patient-generated data throughout the health eco-system including in research and development, and in Health Technology Assessment (HTA) and regulatory processes. The necessity of robust data around the unmet needs, preferences and wishes of patients is clear to all stakeholders however very often, it is only those with the most resource who are in a position to generate such data due to the perceived scale and complexity required to do so. This is, in most cases, not the patient organisation or patient community who are best placed to capture data which truly represents the needs, wishes, preferences and voices of the patients, and which can have most impact for the patient community. This means that data collected can be open to bias or misinterpretation, and in some cases, this can lead to data being misrepresented, misinterpreted or simply unavailable to the community who need it most, and who have the most to gain – or lose – from the results of data generation.
At Patvocates Research, we believe that any data generated about or with patients, should be owned and used by patients, for patients.
This means that we work with patient advocacy organisations wherever there is a research need to better understand how we can help generate reliable, significant and robust data that will have impact where it’s needed, that can be used appropriately and reliably by the stakeholders who will access the data, and will be used transparently for the intended purpose of patients living their best possible life and having the best possible access to treatments, therapies and medications.
"Patvocates Research joins the Patvocates Network as a new specialist division, focusing on an important need within the patient community; generating powerful data through meaningful research which is owned and used by the patient community for the purpose of bettering the lives and wellbeing of patients"
What We Do
Patvocates Research works with patient advocacy organisations to collect, analyse, interpret and report data on critical questions and decisions in healthcare that impact the lives of patients across Europe, and does so in a way that ensures this data can be used as a tool in advocacy, decision-making, policy-making and assessment, for the purpose of patients having the best outcomes and quality of life.
We can help your organisation through a project from start to completion, offering a managed solution in order to ensure that you have the right materials, skills and methodology to generate the evidence that you need for your patient community.
Examples of topics or areas of interest include:
Impact of disease on physical and mental health
Patient involvement in treatment decisions
Organisation and delivery of services and care
Quality of life and wellbeing
Understanding the experience and perspectives of patients, carers and families
Patient preferences for treatments
Information and support needs
Treatment journey: what matters most
What patients think about and experience taking part in clinical trials
Access and inequalities in access to treatment and therapies
Regulatory and Health Technology Assessment in relation to medicines or treatment
Need something different?
The challenges and needs of patient organisations are varied and complex, and there's often no one-size-fits-all solution - just like our patient communities! If you or your organisation are considering generating patient data or making a change in your organisation but the list above doesn't quite cover your needs, we'd be really happy to discuss this with you and find out how we can help you. Please get in touch with us at email@example.com and tell us more about what you're looking for. We look forward to hearing from you!
We can help with...
In summary, every aspect of your project or activity! Our goal is to support patient advocacy organisations in generating powerful, robust, valid and meaningful data - and we help you to achieve this in whatever way is needed, and at whatever stage of the process you're in. Some of the ways we can help are outlined in more detail below.
Does your organisation have a hundred priorities that you don't know which, when, or how to start? Or is your organisation facing a change in circumstance or situation rand you're not sure whether a different direction or focus is needed?
Of course for many of us, the ultimate priority is to help patients - but what's the best way to do that in a sustainable, long-term way? And how do we help our member organisations too?
These are all questions that many patient organisations are facing. We'd be happy to help you answer them, taking into account your individual organisational needs, situation, the external landscape, and your patient community.
We can assist with process or programme transformation, strategic and operational analysis and planning, and issue-based or programme-specific strategy development.
About Patvocates Research
Patvocates Research is borne out of a true commitment to powerful patient advocacy, placing the patient at the forefront of research and development, and ensuring the patient voice drives health policy and decision making. It draws on the wealth of work and experience of Patvocates, founded by and driven by patients and with unique knowledge and experience of the complexities and challenges of the healthcare landscape across Europe and a vast range of disease areas.
With decades of experience in driving forward the importance of evidence-based advocacy and patient-centred decision-making, Patvocates now launch this sister arm dedicating resource, a unique skill set and experience to this critical area of need in Patvocates Research.
The unique placement and offer of Patvocates Research, combined with Patvocates, means we can offer:
Significant knowledge of working with and being part of the patient advocacy community, understanding the complexities, challenges and drivers of patient advocacy and patient organisations
A multidisciplinary team offering a range of solutions to address your research questions to best meet the needs of the patient community, with specialist skills and knowledge aligned with your research needs
Understanding of the complex health landscape including critical stakeholders, industry, regulatory bodies and payers in order to support with getting data to the right audiences
A developed, mature network of key players in advocacy, industry, policy and regulatory affairs across Europe and globally, offering opportunities to connect organisations where it is useful to the project and aims