How can you involve patient advocates in research?

I feel like in a world of numbers, we can get a little too interested in the numbers and we can tend to forget about the people behind them. As a nurse, we have been taught from day one to be a patient advocate. We have been the voice for the patient when they had none. Using a patient advocate keeps the perspective on the patient but does not forget the purpose of the research. When the driving point of the conversation is numbers, the patient advocate is there to speak up when the patient's needs begin to be overshadowed by those numbers.

By weaving the voices of patients into the fabric of research, we create a pathway that aligns scientific inquiry with the genuine needs and preferences of those it seeks to serve. This alignment is not a mere procedural formality; it's a philosophical stance that places the patient at the heart of research. It's about enhancing the relevance of our inquiries, fostering a sense of trust within patient communities, and cultivating a landscape where engagement and participation are not just encouraged but celebrated. The involvement of patient advocates is a step towards a more compassionate, patient-centered approach, where numbers meet narratives, and research resonates with reality.

Absolutely correct. As healthcare professionals, when we have that professional on the team that reminds the team of the lived experiences of patients, it's absolutely fabulous and helps healthcare professionals see from the patients perspectives which in turn have a huge impact on the patient quality of life.

I think a great way to involve patient advocates in the research process and it’s results by initially creating a group on LinkedIn maybe where patient advocates are invited to join in for having any interest and anyone who responds perhaps setting up meetings via Skype or zoom, for example, and collaborating together to discuss with the biggest concerns are and collaborate, are propose solutions and take it from there.

Patient advocates are a trusted source by the patients and their families thus they may have first hand input with added reliability to affect outcomes.

Unquestionably, the patient advocate in any research study should believe in the research and its potential benefits. If feel like it would be a fruitless effort to be unclear about the purpose, goals, and expectations, if the patient advocate morals, ethics, or even religious beliefs may starkly oppose the research. I feel as though just like using someone who is too invested in the research would have a bias, so would one who's beliefs strongly oppose the research.

The patient advocate interest in the research work and how knowledgeable they are in that area of focus for the research, will play a very key role.

Recruiting patient advocates involves strategic partnerships with advocacy groups, online engagement, and collaboration with healthcare providers. Advocates, drawing from personal experiences, illuminate overlooked aspects of conditions. Ideal advocates possess key traits: authenticity through personal experience, dedication to change, effective communication, open-minded collaboration, cultural sensitivity, willingness to learn, positive attitude, and ethical grounding. Through these qualities, advocates enrich research by infusing it with genuine patient perspectives. Their involvement drives patient-centered outcomes and deeper condition understanding, ultimately enhancing the research's impact.

Demographically balanced sample including underserved groups and including those not affected by cancer who may feel that preventative messaging is not relevant to them. Also include those with screening false positives.

Additionally, seeking out patient advocates through resources such as NAHAC, NPAF, Greater National Advocates, Health Advocate X, APHA, etc.

They can also assist /advise with the theoretical frame work of the research because they work with the patients throughout their continuum of care and life after treatment.

Create a forum where patient advocates and primary care clinicians can discuss and formulate plans for the most apt and effective ways to present symptoms, family history and relevant background to optimise diagnosis

Some of us make a living in patient advocacy roles. Many of us come from professional backgrounds, too. Patient Experts, as we're often called, come equipped with not just real-life experiences of the healthcare system, care gaps, and unmet needs etc, but with a plethora of skills too, meaning we're ready, willing, and able to help in many different areas; from survey design and patient recruitment to co-design and strategy.

The key here is developing a collaborative and partnership model of effectively working together on a strategy for dissemination. Patient groups may be low on content for their website, so may be very keen to include new research data on their website. Patient experts and advocates may already be speaking at conferences and events and therefore will be motivated to share new research data in their presentation. Having a common communications strategy can help researchers and patient advocates identify which platforms or events to disseminate research, and to decide on formats on delivery of communications. Patient advocates are very well placed to review for plain language, to ensure the materials are translatable for the patient community.

Evaluating and acknowledging the involvement of patient advocates isn't just about recognizing contributions; it's about celebrating the human touch that they infuse into the research process. Collecting and analyzing feedback becomes a reflective journey that reveals the depth and quality of their impact. When we celebrate and share their successes and achievements, we're not just applauding outcomes; we're weaving a narrative of inspiration and building a legacy of respect, a culture of compassion, a world where patient voices are not just heard but heeded.

Test communications for specific action e.g. screening with a number of different creative treatments, measure response. Test awareness of cancer and the emotional reaction to it - as if it was a brand, measure fear and find strategies to counter this