Patvocates

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Patvocates is a patient-led consultancy and think tank dedicated to driving meaningful patient engagement through expert advice, strategic insights and tailored solutions for stakeholders across the healthcare ecosystem.

10/10/2026

Today, on World Mental Health Day, our team is at the opening of the 39th ECNP Congress in Munich, and the timing feels anything but random.
This year's World Mental Health Day theme, "Lived Experiences Heard: Real Voices, Real Change," reflects something we see in our work every day. Whether it's research, evidence generation or clinical trials, any work related to the brain needs the people living with these conditions to help shape it.
Over the years, we have worked alongside people with lived experience, patients, caregivers, researchers and industry partners across a range of brain. We have listened to stories of people, co-created surveys and studies, and brought different perspectives together around the same table. Our focus has always been the same: building lived experience and the patient perspective in from the start, not adding them at the end.

10/10/2026

Principles of Care only matter if patient advocates and healthcare professionals agree on them together. As part of the initiative led by GBS|CIDP Foundation International and EPODIN, 19 patient advocates and healthcare professionals, joined in Milan, in person and online, to reach consensus on the priorities for the Principles of Care for Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) in Europe, across diagnosis, treatment and long-term management.
That consensus rests on research. Over almost one and a half years, Patvocates led evidence generation involving 92 voices through interviews and workshops across 26 countries. The findings show what the CIDP patient pathway looks like across Europe, including what patients and healthcare providers identify as the Principles of Care that should be established across Europe and in their respective countries.
Today's consensus turns this evidence into a shared position to use for advocacy and for conversations with health systems and policymakers.
Milan is an important milestone, not the end. The work continues.Stay tuned to learn more about the evidence collected on where care works, where it falls short, and what matters most to the CIDP community.

Warm thanks to Richard Sperry, Jean-Philippe Plançon, Lisa Butler, the steering committee members and all the members from the pateint and healthcare community that participated in the interviews from sharing their time and experience.

09/10/2026

From 8–11 November, the Patvocates team will be at ISPOR Europe 2026 in Vienna.

This year's theme, "Shaping the Future of Access Through Science and Policy," arrives as expectations around evidence generation keep evolving. Alongside clinical and economic data, decision-makers increasingly want to understand what patients experience, need and prefer.

We hope this year's discussions move beyond whether patient engagement matters and focus on how patient perspectives can be built systematically into research.

Attending Europe? If you'd like to talk about patient engagement, patient evidence, HTA or access, we'd be delighted to connect.

07/10/2026

Your sofa, shoes or fireplace should be comfortable. Your consultancy shouldn't be.

Like a good coach, teammate or friend, the right partner walks alongside you. They ask the honest questions and help you both grow along the way while being challenged if needed.

That's how we see our work with clients. Our Patient Engagement Services team brings the patient community's real experiences to the table, including the uncomfortable ones, even when they don't match the initial plan. We explore them together, because that's where the most valuable insights are often found.

We don't jump straight to solutions. Instead, we start by asking questions and listening carefully, together with our partners and clients. It may be a challenge for all stakeholders, may take a little longer at the start, but it saves time in the long run. We can sprint when needed, but we believe the best results come from running the marathon side by side.

Sometimes this means having difficult conversations. But those conversations shape meaningful decisions and real change, because patient engagement exists to solve a problem, not to tick a box.

So, at Patvocates, we're not always "yes-people". We're partners who think with you, question with you and keep the patient voice at the centre, so that together we move one step closer to better healthcare.

Shall we take on this challenge together?

01/10/2026

We're a pan-European team, with colleagues working from Spain, Germany, the Netherlands, Italy, Belgium and beyond.

But once a year, we pay a tribute to our Bavarian roots.

Annual Oktoberfest visit is our moment to come together, celebrate the culture of our headquarters and share a hug, a laugh and a Maß (or two).

And yes, we dress the part. Fun fact: Lederhosen and Dirndl started out as everyday clothing for farmers and workers. So they suit us perfectly, because we're certainly not afraid of hard work.

Prost from the Patvocates team!

23/09/2026

Next month our team will be packing bags to go to Madrid for joining around 28 000 participants including oncologists and researchers, patient advocates and industry professionals...

What do we do there beyond networking? While random and planned face-to-face meetings and ideas exchange are essential, we join ESMO for the whole scope of learning activities it offers: the latest clinical trial data, treatment innovations, upcoming changes in the standards of care.

Attending ESMO means to us joining the space where practice-changing research is first presented and debated, multidisciplinary collaboration across cancer specialties happens face-to-face, and the oncology community can exchange ideas, and shape the direction of cancer care for the year ahead.
ESMO is also a great example of how we believe patients should be integrated in medical congresses. Since 2016, the Patient Advocacy Track is well integrated into the main programme to give patient advocates access to the same cutting-edge scientific sessions as clinicians and researchers, alongside sessions built specifically for topics that matter to patients and survivors.

If you are also attending ESMO and would like to catch up, ping us!

17/09/2026

Healing and safety. Medicine and safety. Care and safety.

These pairs should always go hand in hand. Yet healthcare, one of the highest-risk areas there is, still has real room to grow when it comes to patient safety standards and norms.

That's exactly why World Patient Safety Day exists.

This year, the focus is on one of the most vulnerable groups: people living with noncommunicable diseases (NCDs), who depend on safe, life-long care. Long-term care, cross-setting care, timely care, consistent care, all of it is essential for people living with long-term conditions, and that's exactly where change needs to happen. More patient evidence is needed to prove and highlight what NCD communities are missing most. Different healthcare professionals need to interact and coordinate, to see the full picture of their patients' lives, not just one condition in isolation. New policies need to be created. New guidelines need to be adapted.

That's why simply calling for better standards isn't enough. Those standards need to be discussed and co-created together with the people affected, to make sure they play a real role in shaping their own care and services. So as you join campaigns, dialogues, talks, or calls to action today, please make space for those affected most - patient communities

10/09/2026

September is Gynaecologic Cancer Awareness Month, and it matters for a**l cancer too.

The connection is HPV. The same common virus behind most cervical, vaginal and vulvar cancers is behind over 90% of a**l cancers, and people who have had a gynaecologic cancer can be at higher risk of a**l cancer. It is a link that is rarely talked about. A**l cancer can affect anyone, and many of those diagnosed have no other risk factors.

Throughout September we are joining the dots between these cancers, because awareness across all of them helps reach people earlier. The last 3 centimetres matter. Learn the risk factors and symptoms, and test your risk, at www.3cm-asap.org

**lCancerAwareness

07/09/2026

Some decisions carry a weight most people never have to face: whether to test your child for a genetic condition, the invisible burden of disease, and whether to take part in a clinical trial, and what that choice can mean for your time, work and emotional well-being.

Last weekend, in Leuven, Belgium, people living with polycystic kidney disease (PKD) from around the world gathered in a university room to shape the future direction of global PKD advocacy at the PKD international global members meeting, and to lay the groundwork for a long-term advocacy roadmap built on what actually matters to the community, not what's assumed to matter on their behalf. It was a fantastic two days with scientific day on Friday (the 10th anniversary of ADPedKD registry) and patient voice day on Saturday.

Patvocates is happy to have supported this event organised by the phenomenal Flavia Galletti, but we won't be the ones to tell you what was said. Watch for the community's own voices in the days ahead, PKD International Official. Their priorities, in their words. But many thanks go to Djalila Mekahli and her team as well as ERKNeT’s Simge Celik Stojanovic for on-site support.

03/09/2026

Last week, Patvocates was in Munich for Congress - one of the biggest gatherings in cardiovascular health, with around 30,000 people from across the world.

We went to listen and learn. Especially to the 21 sessions providing Patient Perspectives.

We stood for a standing ovation for Konstantina Boumaki, a doctor and a patient herself, part of the , as she spoke about next-generation metabolic health. Moments like that remind you why this work matters.

We were unsettled by data showing doctors are just as vulnerable to heart disease as anyone else, and that in lower-income countries, cardiovascular disease is diagnosed less often, not because it's rarer, but because the care to justify a diagnosis often isn't there. Inequality showing up again.
We learned that lowering blood pressure, even just a little bit, adds 3.3 years of life for men, 2 for women.

We were floored to hear there are over 700 microdeterminants influencing whether someone takes their medication. Adherence is never just one thing. It never was.

A lot to learn. A lot still to sit with.

But if there's one thing we brought home from Munich, it's this: our heartbeat is in sync with everyone in that room working to make patients' voices count. We intend to keep that rhythm steady.

Adresse

Ottobrunn
85521

Telefon

+498962836807

Website

http://www.patvocates.net/

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