Exploring Challenges, Progress, and New Models for Engaging the Public in the Clinical Research Enterprise Clinical Research Roundtable Workshop Summary (2003) / Chapter Skim
Currently Skimming:
Appendix D: Voluntary Health Agencies and the Clinical Research Enterprise: Exploratory Focus Groups
Appendix D: Voluntary Health Agencies and the Clinical Research Enterprise: Exploratory Focus Groups
Pages 57-77
The Chapter Skim interface presents what we've algorithmically identified as the most significant single chunk of text within every page in the chapter.
Select key terms on the right to highlight them within pages of the chapter.
From page 57... ...
The first focus group was composed mainly of Top Management. The remaining three groups were composed of people who play roles related to clinical research, such as program directors, science and research directors, and directors of patient education and services.
|
From page 58... ...
In addition to direct exams such as Ending and, to ~ lesser extent, conducting clinical research, Vitas have found numerous unique ways to ~n/~uen£e clinical beseech. These effods p=~cul~ly tap their ingenuity, flexibility, and speci~ resources to encourage Id enhance clinical research in the interests of their missions.
|
From page 59... ...
· Invited biotechnology and pharmaceutical companies to join a VHA "Industry Liaison Council" to interest the pharmaceuticals in their disease, provide peer coaching to help biotechnology companies navigate the difficult FDA approval process, work with insurance companies to change the reimbursement process for clinical research, develop educational materials for constituents, and provide a patient population for research. Created a liaison group endorsed by NIH that includes several of its Institutes, FDA, biotechnology companies, pharmaceutical companies, and their own medical and scientific leadership, as well as one or two consumers.
|
From page 60... ...
Some reemit far edn~e~ Onals through their local chapters, ~~h the Ares that they fund' ~d, as previously mentioned, through their registries. Some YHAs also inform ~:~ss~on~s (phys~ci~s and :~restig~ors)
|
From page 61... ...
APPENDIX D searchers inevitably come to them to recruit patients for trials. Because of this ownership, they also get early needed information about the trials for dissemination to patients and .
|
From page 62... ...
:~ur~on Alzb~me:~'s Assoc~n Amenc~ Cancer Society American Metes Association Ardency Away Fund Amyotr~c La~ Sclerosis Association Asthma ~ Allege Foun~don of Amenca Epilepsy :Foundat~on The ~ou~£ion ~ighi~n,~ 8jir~dness Kidney Cancer Associatior~ The Leukemia and LymphoTna Society The Na:nona:l Pcmphigus ;Foun~ion Lupus Foundation of Amenca March of Dimes Birth Deflects Foundation Myasthenia Gravis Foundation National Down Syndrome Society Nations Mends depth Association N~tior~] Multiple S£~OSiS Socked National Sleep Con S~e-~Teber ion: Cystic Floss F£~ndan~ (~HA not ~ member of Radons He~h Council)
|
From page 63... ...
dS Boa do you act the in~adon? (PROBE: speciDc sources, ch~ncls, ...)
|
From page 64... ...
Some of the education activities are through the local chapters. The public education campaigns included help lines (86 percent)
|
From page 65... ...
APPENDIX D 65 TABLE D ~ Website Survey of Selected Voluntary Health Agencies, follows
|
From page 66... ...
1946 Masters and Doctoral programs for SWs, RNs American Diabetes $31.6 M Y2000 Yes Yes No Grants, Physician- No Association * >$175 M since scientist training, 1940 Medical scholarships, Conferences American $175 M since 1985 Yes Yes Unclear think not Grants, Peer Foundation for Review, Scientific AIDS Research Advisory, Fellowships American Heart $133.6 M Y2000 Yes Yes No Grants Pre No Association > $1.9 B since and Postdoctoral 1949 Fellowships, Physician-Scientist Fellowship Research Review Program American Kidney $96,825 Y2000 Unknown Unknown No Clinical Scientist No Fund *
|
From page 67... ...
Help line 86% Yes Yes Yes. Medical/ Regional No Yes Foreignlanguage research extranet, education days No links Conferences Yes Yes Yes Local chapters, No Yes Race specific media studies, Foreign language info Yes Yes Yes Disease-specific No Yes Gender specific organizations, studies Media, Celebrity spokes-person Yes Yes Yes Local chapters No Yes Race specific studies, Foreign language info Yes Yes Yes Local chapters Membership for Yes Community based public and pros diversity programs Church, Tribes Yes Yes Yes Unknown No Yes Race and gender specific No on web Yes Yes Yes Local chapters, For Professionals Yes Spanishinfo avail Media, PSAs on Webster No No No -can subscribe Health fairs, No (membership No (Baxter does)
|
From page 68... ...
American Lung Yes. Details not on Yes Association website Grants, Donor program Yes No Grants, No Fellowships, Investigator awards American Tinnitus $1.3 M since 1980 Yes No No Data registry, No Association Grants Amyotrophic New grants for Yes Yes No Database (registry)
|
From page 69... ...
minorities Yes Yes Yes Celebrity PSAs, No Yes Spanishlanguage Local chapters info, Hispanic, AA and gender specific info. No Yes Yes Local chapters, Yes Yes Multicultural + Spanish language info No Yes Yes Local chapters Yes Yes Unknown Yes Yes Yes Local chapters, Yes "Member" of Yes Multicultural info Public awareness database and through local campaign chapters No Yes No Local chapters, Yes Yes Ethnicity trials Fund raisers, PSAs No Yes No Coolio talks to Yes Yes Spanishlanguage teens, Local info chapters, health fairs, community forums Yes Yes No Ed materials No No Spanish language Prevention info Yes Yes Yes Local chapters, Yes Yes Spanish language Media, Experts on info chat calls Yes Yes Yes Celebrity PSAs + No Yes Gender specific Media research, work w/ Amer.
|
From page 70... ...
Details not on Yes Unknown Unknown Medical Advisory Yes Pemphigus website Board, Foundation Conferences, * Grants (rare autoimmune blistering disorders of the skin multi-lingual links
|
From page 71... ...
minorities No No No Easter Seals sales, Only as a donor No ADA media Yes Yes Yes "E-communities," No Yes Gender specific Teen awareness studies, some campaign Spanish Yes Yes Yes Media, Brochures/ No Yes Unknown info in retina + vitreous physicians Yes Yes Yes Unknown No Yes Spanish language info Yes Yes Yes Media No Yes Links to Spanish info Yes No (links toinfo) No (links toinfo)
|
From page 72... ...
~ RN research supports Grants Myos~t~s No No ~o No Patient whisky, No ~ A Ass=~at:ton of Patient survey America (muscle diseases involving me inO~t~on and degeneration of skeletal muscle tissues) National Alopecia $200,~Y2~0 Yes Yes No GFaD[~?
|
From page 73... ...
No Yes Yes Media No Yes Infoin Spanish Yes Yes Yes Local Chapters No Yes Unknown Celebrity spokes person(s) No No No Unknown Yes Yes Unknown Yes Yes National No Yes Infoin 5 language campaign, Celebrity PSAs Yes Yes No Help line Yes Yes Info in Spanish No Yes Yes Help line, No Yes Spanishlanguage Publications No No No Local chapters Yes Yes Latino stories, info in Spanish Yes Yes Yes Media Yes Yes Info in multiple language, Gender specific info continued
|
From page 74... ...
tritest Nations DetmIs not on Yes Yes No Grants, Con~mnce, ITS Osteoporosis website Fellowships, Foundation Appn}x $~8S,Q~ Pro~ssiona~ Y2~t Partner network :National Psoriasis $2~,~ Y2~1 Yes Yes No Grants Fellowships' Yes Foundation [issue registry Anions Sleep Yes, Trough CFnkn~n Unk;nQwn I'm Lion No Foundation * PickwictCInb.
|
From page 75... ...
zinc? m~nonties No Yes Yes TY program on Yes Yes Spanish language :PAX ~1 and ink ongoing web cast Yes Yes Yes PSAs Yes Yes Unkr~owr~ Plo No - public :~o Local chapters ~ Yes Links to foreign survey info language web sites, gender spec~fic studies Yes Yes Yes Unkr~vwn Yes Yes Larks {Q foreign language websites Yes Yes Yes Unmown Yes Yes Unmown No :~o No Scho~+ No Yes Media community screenings Yes Yes No L=al Chapter Yes Yes Unmown Yes Yes No Unknown Yes Approx.
|
From page 76... ...
Tourette Syndrome $370,169 Y2001 Yes Yes No Grants, Scientific Yes Association since 1984 > $5 M Advisory Board Tuberous Sclerosis $1M Y2000 Yes Yes Yes Professional Yes Advisory Board, Alliance (a genetic Tissue donations, disorder tnat Grants causes benign , Fellowships, tumors to form In Investigator many different awards organs) United Ostomy No No No No None No Association TOTAL (49)
|
From page 77... ...
92~- (45) Help line 86% : :~ Spanish language ink 63% t3~)
|
Key Terms
This material may be derived from roughly machine-read images, and so is provided only to facilitate research.
More
information on Chapter Skim is available.