Role of Patient Advocacy Groups in Cancer Research

8/10/2019 Role of Patient Advocacy Groups in Cancer Research

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ROLE OF PATIENT

ADVOCACY GROUPS

IN CANCER

RESEARCH


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WHAT IS ADVOCACY?

Advocacy means set of actions whose main objective is to

sensitize with a view to influencing decisions about a cause or

policy in a stated direction and is done by pleading or arguing

in favor of something.

In patient advocacy, patients are the objects of the stated good

to arise from such actions

Patient advocate is a liaison between patients and healthcare

providers (HCPs) in order to improve or maintain high quality of

healthcare for the patients.


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WHATARETHESHAREDGOALSOFCANCER

RESEARCHERSANDPATIENTADVOCATES?

First and foremost is the conquest of cancer, a life-

threatening disease.

A secondary goal that supports the first is the advancement

of the policies and processes involved in cancer research

that will make those cures possible. And, advocates have

been strong voices for that research infrastructure.


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Cancer researchers and patient

advocates share the goal of

answeringquestionsthat advance

patient care, improve quality of life,

and enhance cancer survivorship.

In addition, both parties seek to

ensure that clinical studies are well-

designed and ethical,minimizing

patient burdens.


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HOWHASTHEROLEOFPATIENTADVOCATES

INCANCERRESEARCHEVOLVED?

There was a time when researchers did not recognize advocates

ability to contribute to scientific discussions to the extent that

they do today.

However, that has changed dramatically during the past decade.

Advocates are increasingly considered a valuable and important

part of the scientific peer-review process.

In addition to becoming an important part of the peer-review

process, advocates are also working within the research programs.


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Advocacy representation is often required by the funding

organization. This gives advocates the opportunity to

understand the issues and represent the patient in a new

way.

Patient advocacy groups these days lead training programs,develop patient and advocate educational materials, and

gathers feedback from the community to advance the

research.


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WHATROLEDOPATIENTADVOCATESPLAYIN

CANCERRESEARCH?

For example, they have played an important role in fundraisingfor

cancer research.

At a national level, patient advocates lobby the government to

give money to cancer and raise funds through philanthropic

organizations. At the local level, there are innumerable examples

of advocates raising money for research.

Patient groups exist to tackle the inequalities of access to

treatment and information that exist.


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In addition, advocacy groups educate patients about various

types of cancer, why clinical trials are important, where they can

access clinical trials, and how they can maintain a good quality of

life. In many of these areas, advocacy groups have led the way

and have been a positive force for improvement.

An increasing number of advocates are also serving on the many

advisory boards and committees that comprise some of the

infrastructure of cancer research.

In these settings, advocates bring the patient perspective to the

planning and implementation of clinical studies.


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They participate in discussionsabout which research topics to

pursue and suggest ways to minimize patient burdens in clinical

trial protocols, develop patient-friendly consent forms and

educational materials, and reduce disparities in clinical trial

participation by increasing awareness and using culturally

appropriate materials and methods.

The advocates also bring a certain level of seriousness to the

discussions, emphasizing the impact of the research on the lives ofreal men and women down the road.


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WHATARETHEOPPORTUNITIESTOENHANCETHE

RELATIONSHIPBETWEENCANCERRESEARCHERS

ANDPATIENTADVOCATES?

Advocates can improve their knowledge of the scientific and

clinical issues in cancer research so they can be well-prepared to

engage in discussions with researchers.

Researchers need to recognize the value that advocates bring to

the research and reach out to them as valuable allies in this fight

against cancer.


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Researchers and advocates should increasingly engage in joint

problem-solving around key research issues, such as boosting

participation in clinical trials, enhancing participant informed

consent, determining mandatory versus voluntary tissue sample

requirements, providing research results to participants, and

educating the public and newly diagnosed patients about bio-specimen research


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A FEW CASES OF IMPORTANCE

In Italy, Europa Donna influenced the Italian government to fundreconstruction surgery at the same time as the initial breast

surgery rather than subjecting women to two separate procedures.

Pressure from the global CML patient community in the form of a

letter writing campaign persuaded the Polish Government to

prescribe Glivec to patients with CML.

In the UK, the National Cancer Research Institute (NCRI) has

patient representation on all strategic committees, working

groups, clinical studies groups and funding and awards

committees.


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In 1991, the USA National Breast Cancer Coalition (NBCC) was

founded with the mission to eradicate breast cancer through

political activism and grassroots advocacy. As a result of intensive

lobbying, the NBCC succeeded in having money appropriated from

the Department of Defence that had been used for Stars Wars to

fund breast cancer research.

European Cancer Patient Coalition (ECPC) is also calling on

governments to ensure that all new cancer cases and all deaths

that have cancer as the underlying cause are recorded in cancer

registries.


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RECENT CONCERNS

The Internet is an important source of information and support for

cancer patients. Many web-based networks, such as the German

Leukamie-Online, provide support to patients by rapidly spreading

news about new research and treatment options.

On the down side patients surfing the net are exposed to many

inherent dangers and there is a huge amount of cancer related

information on the Internet, much of which is of dubious quality.


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There is a concern that many patients do not possess the

necessary skills to critically appraise the information contained

on different sites and a real danger that theyll end up on sites

promoting alternative cancer treatments that dont work.


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THANK YOU

Documents

Role of Patient Advocacy Groups in Cancer Research