Chapter 5. Disease Advocacy Organisations

2014 ◽  
pp. 115-138
Author(s):  
Sharon F. Terry ◽  
Caroline Kant
Keyword(s):  
Disease Advocacy

Disease Constituencies

2019 ◽  
pp. 43-66
Author(s):  
Rachel Kahn Best
Keyword(s):  
Breast Cancer ◽  
Twentieth Century ◽  
Women's Health ◽  
Gay Rights ◽  
Public Life ◽  
Political Advocacy ◽  
Congressional Hearings ◽  
Disease Advocacy ◽  
Health And Illness ◽  
New Type

In the second half of the twentieth century, disease advocacy evolved from universal campaigns to patients’ constituencies. Changes in the experience of health and illness and the nationwide expansion of political advocacy laid the groundwork for patient-led campaigns. Then, AIDS and breast cancer activists constructed a new type of disease advocacy on the foundations of the gay rights and women’s health movements. Unlike the earlier disease crusades, these movements were led by patients banding together to fight diseases that affected them personally, and they blazed a trail for patients suffering from other diseases. As patients’ activism became increasingly legitimate, disease nonprofits proliferated, patients took over congressional hearings, and disease walks and ribbons became an inescapable feature of American public life.

scholarly journals Rare Disease Advocacy Groups and Their Significance in Diagnosis, Management, Treatment, and Prevention of Rare Diseases

Rare Diseases ◽  
2020 ◽  
Author(s):  
Yashodhara Bhattacharya ◽  
Gayatri Iyer ◽  
Aruna Priya Kamireddy ◽  
Subhadra Poornima ◽  
Keerthi Konda Juturu ◽  
...  
Keyword(s):  
Rare Disease ◽  
Rare Diseases ◽  
Advocacy Groups ◽  
Treatment And Prevention ◽  
Disease Advocacy

scholarly journals How disease advocacy organizations participate in clinical research: a survey of genetic organizations

2012 ◽  
Vol 14 (2) ◽  
pp. 223-228 ◽  
Author(s):  
David C. Landy ◽  
Margaret A. Brinich ◽  
Mary Ellen Colten ◽  
Elizabeth J. Horn ◽  
Sharon F. Terry ◽  
...  
Keyword(s):  
Clinical Research ◽  
Advocacy Organizations ◽  
Disease Advocacy

scholarly journals Disease Politics and Medical Research Funding

2012 ◽  
Vol 77 (5) ◽  
pp. 780-803 ◽  
Author(s):  
Rachel Kahn Best
Keyword(s):  
Interest Groups ◽  
Medical Research ◽  
Advocacy Organizations ◽  
Research Priority ◽  
Direct Benefits ◽  
Political Effects ◽  
Disease Advocacy ◽  
Aggregate Effects ◽  
Using Data ◽  
Policy Arenas

In the 1980s and 1990s, single-disease interest groups emerged as an influential force in U.S. politics. This article explores their effects on federal medical research priority-setting. Previous studies of advocacy organizations’ political effects focused narrowly on direct benefits for constituents. Using data on 53 diseases over 19 years, I find that in addition to securing direct benefits, advocacy organizations have aggregate effects and can systemically change the culture of policy arenas. Disease advocacy reshaped funding distributions, changed the perceived beneficiaries of policies, promoted metrics for commensuration, and made cultural categories of worth increasingly relevant to policymaking.

scholarly journals Towards a global framework for capacity building for non-communicable disease advocacy in low- and middle-income countries

2013 ◽  
Vol 20 (4_suppl) ◽  
pp. 6-19 ◽  
Author(s):  
Trevor Shilton ◽  
Beatriz Champagne ◽  
Claire Blanchard ◽  
Lorena Ibarra ◽  
Vijj Kasesmup
Keyword(s):  
Capacity Building ◽  
Communicable Disease ◽  
Middle Income ◽  
Middle Income Countries ◽  
Disease Advocacy ◽  
Non Communicable Disease ◽  
Low And Middle Income

Genetic Alliance Registry and BioBank: a novel disease advocacy-driven research solution

2011 ◽  
Vol 8 (2) ◽  
pp. 207-213 ◽  
Author(s):  
Sharon F Terry ◽  
Elizabeth J Horn ◽  
Joan Scott ◽  
Patrick F Terry
Keyword(s):  
Disease Advocacy ◽  
Genetic Alliance

scholarly journals Realizing Our Potential in Biobanking: Disease Advocacy Organizations Enliven Translational Research

2016 ◽  
Vol 14 (4) ◽  
pp. 314-318 ◽  
Author(s):  
Kelly A. Edwards ◽  
Sharon F. Terry ◽  
Dana Gold ◽  
Elizabeth J. Horn ◽  
Mary Schwartz ◽  
...  
Keyword(s):  
Translational Research ◽  
Advocacy Organizations ◽  
Disease Advocacy

scholarly journals Statement of Data Sharing Goals for Nonprofit Funders of Clinical Trials (Preprint)

2020 ◽  
Author(s):  
Timothy Coetzee ◽  
Mad Price Ball ◽  
Marc Boutin ◽  
Abby Bronson ◽  
David T. Dexter ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Clinical Trials ◽  
Data Sharing ◽  
Clinical Trial Data ◽  
Original Research ◽  
Data Sets ◽  
Research Participants ◽  
Starting Point ◽  
Disease Advocacy ◽  
New Research

UNSTRUCTURED Sharing clinical trial data can provide value to research participants and communities by accelerating the development of new knowledge and therapies as investigators merge data sets to conduct new analyses, reproduce published findings to raise standards for original research, and learn from the work of others to generate new research questions. As a voice for the perspective of participants in clinical trials, nonprofit funders – including disease advocacy and patient-focused organizations – play a pivotal role in the promotion and implementation of data sharing policies. Funders are uniquely positioned to promote and support a culture of data sharing by serving as trusted liaisons between potential research participants and investigators who wish to access these participant networks for clinical trial recruitment. In short, nonprofit funders can drive policies and influence research culture. The purpose of this statement is to detail a set of aspirational goals and forward-thinking, collaborative solutions to data sharing for nonprofit funders to fold into existing funding policies. The goals in this statement convey the complexity of the opportunities and challenges facing nonprofit funders and the appropriate prioritization of data sharing within their organizations and may serve as a starting point for a data sharing “toolkit” for nonprofit funders of clinical trials, to provide the clarity of mission and mechanisms to enforce the data sharing practices their communities already expect are happening.

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