#TogetherWithPatients: Bridging the patient community with Industry
The following blog was submitted by Lisa Holtshousen, Retired Patient Visionary, Roche Canada (retired July 1st 2023).
I’ve had the pleasure of working in the Life Sciences sector for almost 30 years and at Roche Canada for the last 17 of these. In those 17 years there have been a lot of changes and the one that excites me the most is that the healthcare sector is finally realizing the value of working with and through patients. I openly admit I was no different in taking too long to catch up to this idea. As a sales and marketing person for most of my career, it took a personal experience with breast cancer 5 years ago for me to fully realize that to truly be in service of patients, we must put them first. For the last 4 years I’ve had the privilege of being in a unique role at Roche, and really across all of industry – that of Patient Visionary. My remit is to embed the patient voice into the heart of our organization and to build capabilities for us to become a patient inclusive one. Often the term used for this is Patient centricity but at Roche we use Patient Inclusivity as the very word inclusive defines the behaviours we want to see across our organization.
Everything we do at Roche has the potential to impact the patient’s world. Which means their world should be impacting the work that we do, and the solutions we bring to market. And not just once we’ve launched our drugs, but from the start of the process. So that means partnering in new and different ways with Patient communities in order to advance healthcare. We define Patient communities to include a number of diverse patient stakeholder types, to ensure that our insights are representative of those who may be impacted by a condition. This can include patient advocacy groups and organizations, expert patients, individual patients, online patient thought leaders, and caregivers, as well as physicians, nurses, pharmacists and many others who play a role in a patient’s journey. Working in partnership with a diverse group of patient stakeholders and influencers creates the important space needed for dialogue, education and exchange.
One of the ways we partner with Patient communities is through the establishment of patient councils. Some of these councils are specific to disease areas and others partner to discuss larger system barriers and inefficiencies. In the last 4 years, Roche Canada has established 6 different patient councils that provide us with the insights we need to holistically understand a disease from a patient’s perspective and reflect it in our work. And those critical voices balance the voice of the physicians and nurses with whom we also work. I have had the pleasure of chairing the co-creation council that looks at the system barriers and inefficiencies that impede patients from having access to the innovative medicines they need, and the seven patient partner members of this council have brought tremendous value to us, especially in enabling our efforts to become a more patient inclusive organization.
We know that innovative medicine is only meaningful if it reaches those who need it, but how we partner with patients and what that means for us goes beyond patients simply being able to access the medicine. Within the Patient Experience team that I work with, our vision is to advance health and unleash the power of Patient communities through evidence-based advocacy, and to us, Patient partnership is about more than just understanding how a person is diagnosed and treated. It’s about co-designing our innovative medicines and health solutions so that they have a more meaningful impact on patients’ lives. It’s about enabling Patient communities to have an active voice in their care – be it in the doctor’s office, at key decision-making tables where issues related to health policies and access to care and system sustainability are being discussed, or in the development of new diagnostic tests or new medicines. And when it comes to clinical trials, we commit to improving the experience of patients in these trials by embedding their insights earlier on in the life cycle of medicines. We believe in clinical development research being inclusive and representative of all patients in order to optimize evidence generation and improve health outcomes, and we recognize that we are still early in our journey in truly embedding this voice right from the start.
Roche isn’t leading this movement to work with and for patients, it is already happening, but we certainly recognize it as a critical enabler of humanizing healthcare and we are committed to continuing efforts to advance this important work. We greatly appreciate the opportunity to share with you how Roche is working to bridge the community voice with Industry and work #TogetherWithPatients. This work is incredibly important to us at all levels of leadership and as I head into retirement, the head of our Patient Experience Chapter, Anne Marie Hayes, will be picking this up and ensuring it lives on.
CTO wishes to thank Lisa Holtshousen for sharing this blog as a part of #TalkClinicalTrials, a campaign led by Clinical Trials Ontario with support from many voices to build awareness of clinical trials. Why? Because clinical trials matter to all of us. They help to generate better treatments and technologies and ultimately help shape the future of medicine. Read more of the #TalkClinicalTrial blog posts here.