Bringing Hope to Patients as Partners
I recently had the honor and opportunity to host a small panel What do the results mean and how do they relate to previous findings in the literature; appropriate next steps; strengths and limitations Course: SCI102 at the Patients as Partners Conference in Philadelphia. #Patients2019. Joining me on the stage were a couple of stakeholders to discuss the value of educating patients and their allies. Jean Walsh is a patient who has participated in one of our programs called Join-the-Team. Nicole Horvath is a Pfizer colleague, and a patient, working to build patient insights into Pfizer’s Development efforts.
At Patients as Partners, our panel spoke about HOPE and asked the audience to think about a few questions.
- What is the power of hope?
- How much is hope worth?
- How much value do you create each time you give or receive hope?
You can see a video of our What do the results mean and how do they relate to previous findings in the literature; appropriate next steps; strengths and limitations Course: SCI102 below:
Before starting Salem Oaks, I spent 30 years doing R&D at Pfizer in many different roles. Much of my career became helping others to understand the complexities of finding and developing new medicines.
Salem Oaks is committed to equipping patients, caregivers, and advocates to be better partners with industry. We believe that patient engagement is not about the companies’ activities, it is about patients engaging with those companies.
Our hope is that by providing these folks with the knowledge, skills, and confidence to engage the The systematic investigation into and study of materials and sources in order to establish facts and reach new conclusions Course: SCI101 community more effectively, all stakeholders will gain significant value and hope of their own.
Education gives patients, caregivers, and advocates hope
I hope that after watching the video you have an idea of the value that effective education about being part of an R&D team can bring. It brings value to patients like Jean who want to contribute and make the world better for the next generation of FA patients. It brings value to industry by ensuring that more well-informed, more relevant, and more practical insights come from their investments in patient engagement.
Educated patients engage industry more effectively
My hope is that we can take patient engagement efforts and the ROI for these efforts to greater heights by leveling the playing field. Not by dumbing down our scientific and business deliberations for the sake of the “visitor”, but by increasing the capability and the power of those providing the patient expertise.
We have the evidence that experienced patients can make an impact. We have seen well-prepared patients, like physicians or nurses, make extraordinary contributions. We have seen industry people shift into a higher gear and succeed when their lives were changed by a diagnosis. All of these people have taken a long time to get to the big leagues.
We have an opportunity to speed up that learning curve for those without these advantages.
Education is key to patients as successful partners
Last year at the Patients as Partners conference I heard a comment that patients were not always bringing their A-game to the table. Many professionals have spent decades honing their skills. Their companies have invested in them. Patients and those around them, have just started. We need to invest in the growth and development of these players who are new to the game.
But here is the challenge. What is the best way to make this investment? My firm belief is that the best route for patients to find the education they need is through their Disease Foundations and Patient Organizations. However, those organizations are rarely able to afford the development of such education. To them, it is a big-ticket item.
Industry could clearly afford this investment, to them it would barely register on the income statement.
The risk is that education offered by companies may be seen as just another marketing ploy. Think of it from the patient’s perspective – how many company websites do I need to search to see if they have the education I need? Can I trust them or are they just trying to get me to enroll in their trial or buy their product?
We can do better
If you’d like to help us figure out how to bring this game-changing education to patients, caregivers, and advocates that you are working with, please visit our website and join our mailing list. More importantly, contact us if you have any ideas, would like to provide our educational products to anyone, or just want to know more.
Posted by Kevin Freiert