Last month, the Patient Centered Outcomes Research Institute (PCORI) released a funding announcement entitled, “The National Patient-Centered Clinical Research Network: Patient-Powered Research Networks (PPRNs)—Phase One.” Through this solicitation, PCORI seeks to establish a set of Patient-Powered Research Networks (PPRNs) that complement PCORI efforts to establish a national infrastructure of Clinical Data Research Networks through a separate funding announcement.
As an early pioneer of PPRNs, PatientsLikeMe plans to submit at least one Letter of Intent (LOI) to PCORI next month to declare our intention to submit a funding application later this year. We are looking for research partners who share our patient-centric values and desire to build a continuously learning healthcare system to join us as joint collaborators on our June LOI submission to PCORI. We welcome the opportunity to team with academic researchers, pharmacies, clinicians, patient advocacy organizations, and others who wish to partner with PatientsLikeMe.
To that end, we have authored a Request for Proposals (RFP) that outlines the nature of our expected funding application and the information we require from interested collaborators. The goal of the RFP is to identify quality research partners capable of defining high-value, patient-centric research goals worthy of PCORI funding that can be built upon PatientsLikeMe’s existing digital infrastructure and data model. Requirements for responding to this RFP are described in further detail within the RFP itself.
We look forward to receiving high-quality responses to this unique funding opportunity no later than Wednesday June 12, 2013.
On October 24-25th, PatientsLikeMe attended the 8th Annual Patient Adherence, Communication and Engagement (PACE) Conference in Philadelphia. The event focused on how the healthcare industry can deliver measurable improvements in patient adherence (i.e., taking medications as prescribed by your doctor). Put simply, how can we help patients like you take the correct dosages at the correct times?
Why does this topic merit its own conference? Well, as we learned at PACE, medication non-adherence costs more than $300 billion every year in the US alone. You read that right. And this staggering amount is comprised of more than just hospitalization and emergency room costs. It also includes things like lost employee productivity and the cost for less optimal patient outcomes. Essentially, think of it as $300 billion the US could be saving each year – but currently is spending – in the midst of an economic downturn.
Here are some of the other noteworthy takeaways:
- A key factor in non-adherence is that patients may frequently have an incorrect understanding or an unrealistic expectation from their doctor of what their medications will do for them.
- Recently passed US legislation is attempting to change the way doctors are paid. The new law provides financial incentives for health plans to implement quality measures that hold doctors accountable for impacting patient outcomes.
- Many new solutions, such as telemedicine and the patient-centered medical home, are being piloted and studied. The goal is to learn how technology can impact patient outcomes via medication adherence services and remote medical care.
- To remain relevant to patients, biopharmaceutical companies now recognize that they must incorporate the voice and experience of the patient into their decision-making processes.
Last but not least, our very own Chief Marketing Officer and Head of Business Development David S. Williams III spoke about the work PatientsLikeMe is doing around medication adherence. Specifically, he focused on patient-to-patient interaction as an influential driver of medication adherence and how we can give patients the tools they need to (1) understand how their medication is working for them and (2) hold each other accountable for following their doctors’ instructions.
Do you believe connecting with – and learning from – other patients is critical to adherence? Share your thoughts in the comments section.
- Filed Under: Patient Experiences, Research
- Tags: Chris Fidyk, costs, David S. Williams, diabetes, drug compliance, drug non-adherence, economic impact, heart disease, high cholesterol, hypertension, medication adherence, medication non-adherence, PACE Conference, patient accountability, patient-to-patient interaction, telemedicine