OHRS

Participating in research is a choice. As a participant you should feel free to ask questions of the research staff about your rights. You are always entitled to the following: 

• You will always be given whatever time you need to decide whether or not to be in a research study. You should be able to make this decision without pressure or influence from the research staff.
• You can always decide not to be in a research study, and you can also choose to stop even if you decided at first you wanted to participate. Either decision will not affect your relationship with HCC or any care you or your loved ones receive.
• You should always be told what the study is about. You should always also know what will be expected of you during the conduct of the study. This should help you decide whether you wish to participate.
• Research teams should always let you know any reasonably foreseeable risks of being in the study.
• At the same time, you should always be aware of all the benefits that you may receive when you participate.
• Sometimes, there may be costs associated with being in the research, but you will be told of these expected costs ahead of time. If you will be compensated for being in the research, you should know that as well.
• After researchers collect data, it is sometimes really helpful to share these data with others. You have the right to know if your data may be used in future circumstances or researchers. You have the right to know whether and how your confidentiality will be protected.
• You will be told who you can contact if you have questions about the research or your rights.  

In addition to the HCC website, individual institutions host their own research sites listed below.

The Hale Family Center for Families supports families through their experience at Boston Children's Hospital. All patients and families are welcome to benefit from the services.

Beth Israel Deaconess Medical Center offers various cancer support services to support families both during and after cancer treatments.

The Bretholtz Center for Patients and Families is a comprehensive resource center dedicated to the needs of patients and families for support and information while receiving care at Brigham and Women's Hospital.

The Eleanor and Maxwell Blum Patient and Family Resource Centers at Dana-Farber Cancer Institute and Massachusetts General Hospital provide patients and families with comprehensive, up-to-date, and reliable cancer-related information, and resources.

While services across each of the centers may differ, in general each provide support for families including the following:

• Parent sleep spaces
• Children’s activity spaces
• A lending library of books, CDs, and DVDs for patients and families
• Pastoral Care
• Peer support services
• Nutritional counseling and Integrative therapies
• Brochures and pamphlets covering cancer and illness-related topics
• Internet access, including assistance with information searches
• Weekly programming and workshops
• Information related to clinical trials participation
• Yearly calendar of topics and workshops for the community
• Information on each institutions’ Cancer Center programs.

Boston Children's Hospital Office of Community Health’s efforts are focused on offering programs and partnering with others in the community to offer support and services that benefit children and families in Boston. These community effors are specifically to support individuals who are the most affected by issues that impact someone’s overall health such as the consequences of poverty, living in unstable or unsuitable housing, being unemployed or underemployed, and being exposed to violence. While these initiatives primarily benefit Boston area families, these programs have informed other efforts, policies and changes in care that improve the lives of children and families across Massachusetts and the US.

Through its Community Benefits Department, Beth Israel Deaconess Medical Center strives to provide quality and equitable care to all its patients. The Community Benefits Committee works in collaboration with hospital leadership and the area’s key community health stakeholders and residents to address the needs and priorities of the community. Service to community is at the core of this mission to meet the goals of caring for the underserved and to work to change disparities in access to care. Including those that the hospital serves is integral in this mission which has worked toward implementing programs and services in the area to improve the current and future health status of medically underserved communities, and ensuring that all patients receive equitable care that is culturally responsible as well as welcoming and inclusive.

The Center for Community Health and Health Equity at Brigham and Women's Hospital advances systems of care, research, and community programs that elevate the health status of the communities served by BWH, especially the underserved communities in and around Boston. A number of programs have been implemented which aim at reducing violence, improving birth outcomes, increasing rates of colorectal cancer screening, and advancing education opportunities for young people.

The Dana-Farber Cancer Institute Community Benefits Office supports the Institute's goal to reduce cancer risk among medically underserved populations. To assess the needs of local residents, the office works with City and state health departments, Community partners, and Boston-based coalitions. In collaboration with staff throughout the Institute, the office serves as a bridge with community organizations and establish evidence-based and sustainable outreach programs. The Community Benefits Office is on the front lines of supporting and collaborating on programs designed to eliminate disparities in breast, colon, skin, and prostate cancer; educate diverse populations about tobacco cessation, human papillomavirus (HPV) prevention and screening, and clinical trials; and strengthen the support system for medically underserved populations. In short, the office is committed to making Dana-Farber Cancer Institute's care and research findings more accessible to everyone within and outside its walls.

Dana-Farber Brigham Cancer Center offers a variety of educational seminars and support groups to help adult patients and their families find tools to regain a sense of control over their lives. These groups, which are geared to specific cancers and methods of treatment, give patients the opportunity to meet and share information and moral support, facilitated by experienced staff. The groups cover topics such as the role of spirituality in illness, ways to eat better, relaxation techniques, and integrating exercise into treatment and follow-up care.

The Breast Cancer Advocacy Group at Dana-Farber Cancer Institute is a group of breast cancer advocates that team with researchers to address patient concerns in research. The group focuses on the creation and conduct of research to improve patient outcomes. The advocates are made up of both researchers and non-researchers with varying levels of expertise in the research field, and work alongside HCC researchers in several research related endeavors.

The Massachusetts General Hospital Center for Community Health Improvement focuses on the social determinants of health such as housing, education, employment and access to care. The group is comprised focuses on people and resources to address health inequities and build healthy, safe and thriving communities.

The Cancer Care Equity Program at Massachusetts General Hospital was developed to promote awareness about and access to cancer clinical trials through community outreach and education, financial assistance, and patient navigation. Cancer treatment can present very unique obstacles and difficulties to patients, including needing child care, difficulty taking time off of work, and more obstacles related to financial costs above those covered by insurance. The Cancer Care Equity Program provides support to Massachusetts General Hospital patients who are financially burdened by clinical trial participation in order to ensure all patients have equal access to clinical trials.

While HCC and it's member institutions provide a number of patient outreach programs and offices, you can find additional information on various websites outside of the HCC network. Each of the below websites includes valuable resources on your potential involvement in human subjects research:

• The Office of Human Research Protections, part of the U.S. Department of Health & Human Services provides a website devoted to its Education and Outreach program. This site provides valuable information about research participation, educational events, and the regulatory framework that guides the ethical review of human subjects research. The US Food and Drug Administration (FDA) has a similar patient education website where you can learn more about clinical trials and find a trial that might be right for you. Clinical trials are voluntary research studies conducted in people and designed to answer specific questions about the safety or effectiveness of drugs, vaccines, other therapies, or new ways of using existing treatments. This website contains information on different types of clinical trials, what you may need to know about informed consent forms, and information about Institutional Review Boards and how they oversee research involving human subjects.
• The National Cancer Institute (NCI), the institute within the National Institutes of Health devoted to cancer related research similarly includes a patient resources website, including information regarding cancer diagnoses, treatments, and care management.
• The NCI also provides a guide on Understanding Informed Consent and information on tumor DNA sequencing in clinical research.

Cancer is a genetic disease because it alters our DNA sequencing. DNA and tumor sequencing is an abstract term for many, but there are a number of resources that can help explain these terms.

• National Society for Genetic Counselors: About Genetic Counseling
• National Society for Genetic Counselors: Finding a Genetic Counselor

The Senior Director of the Office of Human Research Studies, in consultation with the IRB Chairs, the Institutional Official, and research leadership will assess HCC's outreach efforts on a periodic basis and implement any changes deemed necessary. The assessment may include feedback from the organizations listed on this page, HCC Leadership, Research Directors, Research Teams, as well as any necessary feedback from member institution family resource offices and community benefits offices listed on this page, and the HCC Communications Office, which each hve their own developed periodic assessment plans.