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.

10/09/2026

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.

27/08/2026

Every year, valuable health research stalls, not because the science isn't ready, but because sharing real patient data comes with real privacy risks.

Synthetic data has the potential to support research and innovation while helping to protect patient privacy. But earning public trust depends on one thing: whether it's built with patients and citizens at the table, not just data scientists.

That's exactly what the SYNTHIA European survey is gathering, views from across Europe on trust, privacy, data sharing, fairness, and the role of synthetic data in healthcare research and innovation.

As we enter the final phase of our survey collection, we would like to hear from as many people as possible before it closes. The survey is available in five languages and takes just a few minutes to complete.

Your expectations, concerns, and hopes for the future of healthcare can help shape how this technology is developed and used for the benefit of patients everywhere.

Learn more about the survey and why your participation matters: https://lnkd.in/e9QR6pxF

Don’t miss the chance and take a few minutes to tell us about your expectations, concerns, and hopes for the future of healthcare. Your voice can help shape how innovation is developed and used for the benefit of patients.

This is your moment to contribute: https://lnkd.in/dpvkd5Yx

06/08/2026

Summer, we're all yours! Patvocates team is taking a well-earned break next week to recharge, unplug, and enjoy some summer sun. We'll be offline from Monday, August 10 to Friday, August 14 (both dates included) and back at it with fresh energy right after.

Thank you for your patience — see you soon!

03/08/2026

What is ESC Congress 2026 in Munich about? Putting it roughly in numbers it’s nearly 30,000 cardiologists, researchers, allied health professionals, and industry stakeholders from over 170 countries.

Sounds impressive and that’s what makes it one of the highest-leverage opportunities in Europe to connect with the voices shaping cardiovascular care.

For us, from patient engagement it's a rare concentration of decision-makers and specialists in one place to stay ahead of how emerging trends (this year's focus is AI in cardiology) will affect patients and the advocacy landscape.

That’s the reason why we don't want to miss it!
If you are attending it as well, ping us, and let’s connect!

04/06/2026

June is traditionally a high season for conferences. No surprise Patvocates team is packing its bags again – to go to Stockholm. While the Swedish capital is famous for its long summer evenings and white nights, we head there for another reason – for EHA 2026, where the global hematology community comes together to exchange ideas, challenge perspectives, and shape the future of care.

Over four intensive days, discussions will span everything from blood cancers and rare hematological disorders to gene and cell therapies, stem cell transplantation, thrombosis, and precision medicine. EHA brings together the people behind the progress: researchers, healthcare professionals, patient advocates, industry leaders, and everyone working to improve outcomes for patients.

Will you be in Stockholm from 11-14 June? We'd love to meet. Whether it's a scheduled meeting, a spontaneous coffee, or simply a chance to catch up, please reach out.

And yes, while EHA will (no doubts!) keep us busy from morning to evening, we're not ruling out a moment to enjoy those famous Nordic white nights.

02/06/2026

The Patvocates team is heading home from tired, inspired, grateful, full of ideas, but most importantly ready to act.

One moment at this year's ASCO stood out above all others: the presentation of a new treatment for advanced pancreatic cancer that doubled average survival and received a standing ovation in the plenary session. For a disease where meaningful progress has been so rare and outcomes so poor, it was a powerful reminder of why everyone comes to ASCO in the first place.

At the same time, it reinforced another thought: breakthroughs like this are still too rare. Every decision about research priorities, trial design, endpoints, access, and implementation matters. Patient-focused science, robust evidence, and incremental innovation save lives.

Throughout the week, we met amazing US-based patient advocacy organisations doing remarkable work, not only supporting patients but also generating evidence and delivering cancer care on the ground despite limited resources. We spoke with pharmaceutical companies that are investing seriously in early and meaningful patient involvement, and others that are still trying hard to make that ambition a reality. Progress is real, but it remains uneven.

One of the highlights was a candid roundtable discussion between FDA representatives and patient advocates. Open, direct, and unscripted conversations like these between regulators and patient advocates help uncover difficult truths and move the field forward together. We would love to see more conversations like this in Europe.

We also noticed that some of the more policy-focused, controversial discussions that made previous ASCO meetings so interesting seemed less visible this year. Perhaps a reflection of the current climate. However, innovation does not happen in isolation from policy, regulation, or societal realities.

Our biggest takeaway is that patient engagement should not be a parallel conversation taking place next to research. It should be part of how research is done.

At Patvocates, that’s what we’re trying to contribute to every day, working with NGOs and companies alike. Not by celebrating patient engagement as a separate discipline, but by helping ensure that patient perspectives shape the evidence, decisions, and innovations that ultimately determine outcomes.

That’s why we go where healthcare decisions are shaped: scientific congresses like ASCO, where the future of cancer care is debated, studied, and defined.

A huge thank you to everyone we met in Chicago, and to the American Society of Clinical Oncology (ASCO) and the Conquer Cancer, the ASCO Foundation for making patient advocates so welcome.

26/05/2026

Why does ASCO 2026 matter? Because it’s where the future of cancer care takes shape.

It’s the best place for cutting-edge science (first presentations of major study results are often being done here), networking with global leaders in cancer field, may it be oncologists, researchers, pharma or patient advocates. That's why next week Patvocates team will be attending ASCO 2026 in Chicago.

Ping us if you would like to schedule a meeting on-site to talk about meaningful patient engagement, and the patient research and evidence that can help underpin it.

Stay tuned for our insights and, of course, more jumping pictures. (Again? Absolutely YES.)

20/05/2026

Today, on World Clinical Trial Day, it’s the perfect occasion to reflect on the difference meaningful patient engagement in research can make for both research and patient outcomes.

Decisions on the design, conduct, and a**lysis of clinical trials should be based on robust evidence, not on beliefs or testimonies. That is why, at Patvocates, we are determined to ensure those decisions are informed by a deep understanding of patients’ needs, experiences, and expectations. This is also why we launched the Patvocates Patient Evidence & Research Unit (PERU), dedicated to generating robust patient evidence that helps inform and shape more relevant, inclusive, and impactful decisions.

Clinical outcomes are essential, but they do not tell the full story. Patient experience data matters just as much. Patient involvement in the early stages of research is key to ensuring trial designs meet not only regulatory expectations, but also inform downstream decisions on HTA and reimbursement. Too often, trial designs focus primarily on clinical endpoints, lack evidence on unmet needs and patient preferences, and fail to adequately measure patient-reported outcomes. Yet all of these are essential to understanding patient reality and reflecting the true patient value of an intervention.

Patients should not only serve as data sources by participating in research - they should help shape it. In addition, many decisions require evidence generated independently by the patient community, including data on burden of disease, unmet needs, patient preferences, quality of life, treatment experience and satisfaction, patient pathways, and barriers to care.

That’s why, on World Clinical Trial Day, we should also recognise the complementary evidence that clinical trials and clinical outcomes alone cannot provide.

Within our PERU team, we help clients (NGOs, and companies) generate patient evidence, conduct lived-experience research, map patient pathways, run surveys, and carry out preference studies. PERU works to ensure healthcare stakeholders better understand what matters most to patients and caregivers, and use those insights to improve research, policy, care, and access.

Collaborating strategically with communities on evidence generation - not simply collecting patient evidence from individuals - is just as important as scientific rigour in research. That’s what we do in Patvocates, day by day.

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