If you are a person with a disease, otherwise known as a patient, you should know that in the world of scientific research you are the new “cool kid.” It’s true – the time of patient engagement has finally arrived.
Patients: They're at the Table – It’s About Time to Ask Them What Should be Served
Conversations and healthy debate about issues facing our industry and the health care system are critical to addressing some of today’s challenges and opportunities. The Catalyst welcomes guest contributors including patients, stakeholders, innovators and others to share their perspectives and point of view. Like in our Conversations series, views represented here may not be those of PhRMA, though they are no less key to a healthy dialogue on issues in health care today.
In celebration of Parkinson’s Awareness Month, we’re pleased to host a guest blog from Veronica (Ronnie) Todaro, M.P.H. and vice president, national programs at the Parkinson’s Disease Foundation.
The future of patient-centric scientific research
If you are a person with a disease, otherwise known as a patient, you should know that in the world of scientific research you are the new “cool kid” – everyone wants to know you, to have their picture taken with you, to invite you to dinner. It’s true – the time of patient engagement has finally arrived. Government agencies, drug companies and nonprofit organizations are clamoring for discussions on patient-centeredness and ways to include the patient voice. It is as if a huge switch has been thrown, illuminating the importance of bringing people living with disease to the drug development table.
W
e live in a world where there is a disconnect between the needs and priorities of patients and treatments that are available to help them. After spending a decade advocating for patient engagement in research to help narrow this disconnect – a labor of love for the Parkinson’s Disease Foundation and now part of our DNA – I can’t help but be hopeful when I see recent developments. Why? It isn’t because I think the future of disease knowledge and therapy development lies in authentic partnerships between researchers and people living with disease. It’s because, I know it does.
Despite my optimism, I can't help but wonder: are we inviting patients to the table to simply provide feedback on a set research “menu” or are we going to actually ask for their input on what to serve?
One of the driving forces behind patient engagement is to do a better job at aligning the scientific goals of researchers with those of people living with disease 24/7. So it should be a given that we need to ask patients what matters most to them and what trade-offs they are willing to make in regards to their own health. But as we move forward and the answers are provided, we need to remember that it is one thing to simply capture the patient voice, perhaps in an effort to fine-tune an existing research agenda. It is quite another to utilize that voice as the compass by which we steer the ship when solving and treating disease.
Back in 2013, PDF tested the concept with an online survey for our first Community Choice Research Awards, a sort of “people’s choice” of scientific research. The results very quickly reinforced the importance of doing basic market research – asking our customer, the patient sitting at the table, what they want to see on the menu.
In just five days, more than 300 research questions were submitted. Not only that, two of the top priorities submitted were disabling, yet under-recognized and under-researched symptoms of Parkinson’s disease – fatigue and gastrointestinal dysfunction. Both symptoms were the focus for separate day-long meetings that included researchers and clinicians, industry representatives, people with Parkinson’s disease and care partners – all of whom were excited to collaborate on issues that had barely been touched by science.
The result of our "people's choice" was that the disconnect between what matters to patients and what is studied by scientists is now smaller. It makes me wonder how much further along we would be in both the knowledge and treatment of diseases like Parkinson’s if we employed this model years ago. Would we have known much sooner that Parkinson’s is more than a movement disorder? Would we have understood that the non-motor symptoms can have more devastating consequences on people's’ lives than do tremors and dyskinesias? How many people have had to suffer the consequences of an out-dated model driving research decision-making?
But, instead of focusing on the past, let's use this knowledge as a lesson to usher in a new era – one in which we do not wait 20 years to study fatigue, but instead study it today.
Parkinson’s is not the only disease to benefit from this patient-led approach. We see more and more patient groups, government agencies, research institutions, drug companies, even Congress, getting on board. But much more needs to be done.
At PDF, we certainly understand that changing research – in Parkinson's and other disease areas – is no small feat. In fact, it's a huge proposition that requires changing the motivations, cultures and structures of a complex multi-billion dollar enterprise that has a life of its own. While daunting, it should not stop research advocates everywhere – patients, scientists, pharmaceutical executives and funders – from joining us and making it happen bit by bit. After all, small streams make a river.
This April is Parkinson’s Awareness Month and PDF is once again urging people living with Parkinson’s disease to drive the Foundation’s research agenda through the Second Annual Community Choice Research Awards. People with PD and care partners can vote from now until Thursday, April 30 by visiting our website, www.pdf.org/communitychoice.
The cool kids have been invited to the table. It is time to stop ordering for them and let them plan their own meal.
Veronica (Ronnie) Todaro, M.P.H., is Vice President, National Programs at the Parkinson’s Disease Foundation. Learn more about Ms. Todaro and the programs she has pioneered to engage patients in Parkinson's disease research by visiting www.pdf.org/bio_todaro.
Conversations and healthy debate about issues facing our industry and the health care system are critical to addressing some of today’s challenges and opportunities. The Catalyst welcomes guest contributors including patients, stakeholders, innovators and others to share their perspectives and point of view. Like in our Conversations series, views represented here may not be those of PhRMA, though they are no less key to a healthy dialogue on issues in health care today.
