Date: Mon, 18 Mar 2024 21:48:22 -0400 (EDT) Message-ID: <536917608.2348.1710812902253@FSCCRW-WIKI02P.nih.gov> Subject: Exported From Confluence MIME-Version: 1.0 Content-Type: multipart/related; boundary="----=_Part_2347_736023993.1710812902253" ------=_Part_2347_736023993.1710812902253 Content-Type: text/html; charset=UTF-8 Content-Transfer-Encoding: quoted-printable Content-Location: file:///C:/exported.html
Shannon K. Bell, MSW, Directo= r, Office of Advocacy Relations, NCI Bldg 31 Rm 10A28 would like to pr= esent a seminar on Patient Advocacy Relations at this years FYI symposium= span>
Here is her overview of her proposed advocacy presentation. Please =
let me know if the steering committee thinks that this should be added to t=
he meeting or if there are any questions or concerns. She is willing to mod=
ify the plan/outline if we believe that a different approach might be more =
useful.
EMAIL FROM SHANNON:
I am hoping to introduce the concept of Research Advocacy, ie: the idea = of engaging advocates in the research process:
- Is it a good idea?
--If so, why?
- How can benefit the research - and therefore patient outcomes
- How can benefit the researcher
Here is an outline:
- The goal of involving advocates in research
- Models of Advocacy
--Advocacy Continuum
--Five Types of Advocacy
- Definition of a research advocate
- A framework for Research Advocacy at NIH
--How OAR can support you
I have attached an overview of advocacy to give you some context. Please= let me know if you have any questions or concerns. I'm happy to modify the= plan/outline if you feel a different approach might be more useful.
Shannon K. Bell, MSW
Director, Office of Advocacy Relations, NCI Bldg 31 Rm 10A28, 301-4=
51-3393 Key info about NCI: http://www.cancer.=
gov/aboutNCI/servingpeople
Advocacy Background from the National Cancer Institute (NCI)
The goal of involving advocates in research is to enhance the scientific= process and improve patient outcomes by providing diverse perspectives.&nb= sp; Advocates have become increasingly involved in the research process ove= r the last several decades. Within the last decade, the involvement o= f patient advocates in the research process, particularly in the cancer res= earch process, has been made a priority by the governments of the United St= ates and the United Kingdom. At the National Cancer Institute (NCI) t= he Office of Advocacy Relations (OAR) coordinates advocate involvement in N= CI activities. Models of Advocacy Advocacy Conti= nuum (developed by the National Coalition for Cancer Survivorship, found at= http://www.canceradvocacy.org):
=C2=B7 Personal Advocacy =E2=80=93 finding infor= mation, getting a second opinion, working for rights around privacy, employ= ment, health insurance, etc.
=C2=B7 Community Advocacy =E2=80=93 speaking to = others in the community, participating in support groups, engaging in commu= nity-based fundraising, etc.
=C2=B7 National Advocacy =E2=80=93 lobbying Cong= ress around cancer concerns, telling one=E2=80=99s story in the national me= dia, participating in federal peer review Five Types of Advocacy (deve= loped by Jane Perlmutter, Ph.D., Consultant and Cancer Research Advocate, f= ound at http://www.gemini-grp.com):
1. Research - Ensure high quality research that is sensitive= to the priorities of patients
2. Support - Help people who are facing cancer
3. Fundraising - Raise and distribute money worthy organizat= ions involved in patient support, research and public outreach/education
4. Outreach and Education - Increase public awareness of ris= ks and realities of cancer as well as methods and progress of research
5. Political - Impact public policy through lobbying &n= bsp;Advocacy at the National Cancer Institute
The NCI=E2=80=99s OAR works primarily with those who are in a research a= dvocacy capacity at the national level. OAR defines a research advoca= te as:
=C2=B7 Someone who bring= s a non-scientific viewpoint to the research process and communicates a col= lective patient perspective.
Note: A <=
em>patient perspective is created when a person goes through personal =
or professional experience with the disease. A collective pa=
tient perspective is created when the person has knowledge of others=E2=80=
=99 disease experiences and conveys this collective patient perspective rat=
her than their singular experience.
=