Patients Count

 

Advancing the Science of Patient Input

Through its Patients Count program, FasterCures aims to improve health by expanding opportunities for patients’ perspectives to shape the processes by which new therapies are discovered, developed and delivered.

We do this by:

  • expanding the capacity of academics, industry and patient organizations to build upon the science of patient input
  • fostering patient-centric policies and practices that enable greater patient participation in decision-making
  • advancing the dialogue on the benefits of patient-centricity across the medical product lifecycle

PatientsCount

Initiatives

As patient input becomes an increasingly hot commodity across the biomedical research ecosystem, momentum is building to find effective ways to unlock this resource and more meaningfully integrate patient perspectives into drug development and regulatory decision-making. FasterCures is, and has always been, keenly committed to fostering this integration and elevating the voice of patients throughout the R&D continuum. Patients Count represents the bringing together of three existing FasterCures initiatives under one umbrella: 

Benefit-Risk Assessment

There is no such thing as the patient perspective, as a static entity. Even for patients with the same condition, needs shift and change in response to dynamic circumstances and the advent of new therapies. What a patient might want or expect is only one of the many pieces of information an FDA reviewer must consider to determine safety and efficacy of a new drug application. This initiative fosters science-based methods for eliciting and understanding dynamic patient perspectives in ways that will be useful to drug developers, regulators, health-care professionals and payers.

Value & Coverage

Even if we are successful at getting new treatments through the R&D and approval process, the question remains whether payers - including the federal government - will be willing to pick up the tab for them. When it comes to the issue of value and coverage for medical innovations, the medical research community is in search of a better understanding of the evidentiary standards that payers consider when reimbursing treatment and care. This initiative explores the role medical research stakeholders, including patient groups, could and should play in providing a framework for an informed discussion about health-care coverage decisions.

TRAIN

Big, transformative ideas in medical research are coming from small but mighty patient-driven foundations. The way they fund and find research are bucking traditional processes. The Research Acceleration and Innovation Network (TRAIN) convenes dozens of forward-thinking foundations to learn from each other and share their novel solutions with the rest of the medical research system.


Leadership Council

FasterCures' Patients Count Leadership Council is comprised of key opinion leaders in academic, patient advocacy, biotechnology, pharmaceutical, policy and other stakeholders who share an interest in improving health by expanding opportunities for patients’ perspectives to shape decision‐making at all levels of R&D.


Resources

Patients Count Network

A dynamic, online platform, hosted by AltaVoice (formerly known as PatientCrossroads), this network collects up-to-date information about patient organizations of all sizes. Individual profiles for each organization allow foundations to showcase their strengths in R&D and patient care related topics. Users can retrieve information by disease area, geographic location, research interest and organizational capacity. Through targeted periodic surveys and reporting, the Patients Count Network is a place for patient organizations to share and learn from each other and for other stakeholders to discover the current issues and topics most important to foundations. Explore and join the network today. More »

Resource Library

This online library aims to help users find a variety of annotated resources about patient engagement to help them launch patient-centered efforts, enhance existing programs or identify where more work is needed. More »

Science of Patient Input Resources

In early 2016, FasterCures completed an environmental scan of collaborative initiatives that have generated resources for advancing the science of patient input. We documented our findings in an article titled, “On the Path to a Science of Patient Input,” published on April 27, 2016 in Science Translational Medicine. This table displays resources that may be helpful to individuals launching patient-centered efforts as well as to seasoned practitioners who wish to identify where more work is needed. More »

The Power of LanguageExpanding the Science of Patient Input: The Power of Language

Published: November 2016

FasterCures reviewed more than 100 public documents and websites and found nearly 200 terms related to patient engagement. In this report we share key findings and recommendations. We dive deep into the various uses of four terms to illustrate how different sectors and contexts are shaping meaning as a step toward greater shared understanding.

pain points and potentialExpanding the Science of Patient Input: Pain Points and Potential

Published: April 2016

Patient engagement has been called the “blockbuster drug of the 21st century.” Indeed, studies find that the more engaged and involved patients are with their health and health care, the better the outcomes. There is now growing interest in engaging patients in another aspect of health care: drug and device development. Borrowing methods from the fields of health economics, outcomes research, epidemiology, social sciences and marketing sciences, a new science of patient input has emerged, embracing data as a means for measuring patient-centered outcomes and quantifying patient preferences.

F1.mediumOn the Path to a Science of Patient Input

Published: April 2016

In an article published in Science Translational Medicine, FasterCures’ Margaret Anderson, executive director, and K. Kimberly McCleary, managing director, find that momentum is building to incorporate patient preferences into the biomedical R&D system so that products and services better align with patient needs, improve individual and public health and reduce time and spending on unproductive care. They track more than 70 collaborative initiatives clustered in six categories that are defining and shaping a developing field: the science of patient input.

Screen Shot 2016 03 31 at 4.39.14 PMIntegrating Patient Perspective in to the Development of Value Frameworks

Published: March 2016

There has been growing concern about increased health-care spending, which has spurred activity around appropriate ways of assessing the value of treatment options. In addition to the challenges this poses to individual patients, payers and product developers alike, patient advocacy groups face a dilemma: they want to support new innovations that will help their constituents, but they also want to make sure that the value of these new treatments are based on criteria that matter to patients and that patients will be able to afford them.

PatientRegistriesReportCoverExpanding the Science of Patient Input: Building Smarter Patient Registries

Published: February 2016

Decision-makers in research, industry, policy and health-care settings are actively seeking robust sources of patient data to inform patient-centered practices, policies and outputs. Scientific rigor throughout this process is of paramount importance to ensure solid outcomes. This report, as a part of our Patients Count: The Science of Patient Input program, is aimed at establishing rigorous methods and reliable practices for understanding and incorporating patient needs into the process of developing, regulating and delivering new therapies.

AnecdotaltoActionableFrom Anecdotal to Actionable: The Case for Patient Perspective Data

Published: November 2015

To define and scale effective patient engagement requires a paradigm shift, one that is already beginning. Borrowing methods from the fields of health economics, marketing, and engineering, a new science of patient input has emerged, embracing data as a means for measuring patient-centered outcomes and quantifying patient preferences. This paper presents a model for advancing the collection and application of Patient Perspective Data, along with initial ideas for how such data might inform drug development and regulatory processes. 

F1.mediumFrom passengers to co-pilots: Patient roles expand

Published: June 2015

Patient engagement offers the promise of advancing more personal and efficacious medical products faster than the typical ~15-year discovery-to-market timeline. Here, we explore the early foundations of patient engagement, where it occurs in the drug-development pipeline, the power of recent policy initiatives, and prospects for success in improving health outcomes.


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