Advocate Researcher Working Together Toolkit Updated July 2017

Transcription

1 Advcate Researcher Wrking Tgether Tlkit Updated July 2017 Tls develped t assist researchers and advcates seeking t wrk tgether n research grant prjects. These tls were created and are regularly updated by Susan G. Kmen s Advcates in Science (AIS): ARMs (Advcates, Researchers, Mentrs) Initiative Taskfrce AIS Steering Cmmittee This Tlkit includes: Building advcate researcher relatinships t strengthen research Timeline fr Full Applicatin Develpment Guidelines fr Advcate Invlvement in Kmen-Funded Research (Als available at: Guidelines fr Advcates) Patient Advcate Invlvement Plan Suggestins fr Researchers Writing a Lay Abstract Kmen Schlar Testimnials (available separately upn request) Clinical Bryan Schneider, MD; Directr, IU Health Precisin Genmics Prgram. Indiana University Melvin and Bren Simn Cancer Center Basic/Translatinal Geff Wahl, Ph.D.; Daniel & Marina Lewis Chair & Prfessr Gene Expressin Labratry, Salk Institute, CA Basic/Translatinal Danny R. Welch, Ph.D., Prfessr & Chair, Dept. f Cancer Bilgy, The University f Kansas Cancer Center Cmmunity Health--Anna Maria Naples, Ph.D., MPH; Prfessr, Dept. f Medicine & Helen Diller Family Cmprehensive Cancer Center, University f Califrnia, San Francisc, CA Cmmunity Health Amelie G. Ramirez, D.Ph.; Prfessr & interim Chair, Dept. f Epidemilgy & Bistatistics, The University f Texas Health Science Center, San Antni, TX Resurces fr advcates (Please refer t: ) Patient Advcate Letter f Supprt/Cmmitment Patient Advcate Bi Template & Examples Last fall s The Call t ARMs: Advcates, Researchers, Mentrs webinar can be view at: This webinar fcuses n the Grant Implementatin and Cmpletin phases f the grant prject.

2 Building advcate researcher relatinships t strengthen research Intent: Kmen seeks t encurage researchers t develp prductive, lasting relatinships with patient advcates Why: All Kmen-funded grant mechanisms require at least ne advcate t be actively invlved t (1) ensure patients perspectives are integrated int the research decisin-making prcess, and (2) energize science t find cures. It als facilitates advcates becming well-versed in the science f breast cancer and cmplexities f research. This empwers them t be mre effective cmmunity ambassadrs fr research and cntributrs t the research enterprise. Hw: Advcates are a critical part f the research/mentr team. They shuld be invlved in every step f the research prject, including the planning, implementatin and public disseminatin f the research. Wh: Advcates, invlved as mentrs r as a part f the research team, shuld: Have a strng persnal cnnectin t breast cancer (i.e., breast cancer survivrs r csurvivrs, such as a clse family member r persnal caregiver.) Their experience better infrms the research decisin-making prcess by prviding the unique and valuable perspectives n what it s like in real life t be a cancer survivr r c-survivr. Be bradly cnnected t ther breast cancer survivrs/c-survivrs, t assure a knwledgeable, cllective perspective (vs. an individual perspective) is integrated int the scientific dialgue and decisins mst impactful and imprtant t patients/survivrs. A brad, cllective perspective helps advcates mre effectively share and identify what s meaningful t patients, and what will resnate (r nt) with patients. Key Pints: Outcme: The gal f including an advcate(s) is t build a lng-term, mutually beneficial, and prductive relatinship t enable bth a better understanding f the research by the advcate, and a better understanding f hw the research can and shuld impact patients fr the researcher. The purpse f requiring an advcate ges far beynd just including a persn s name n a grant t meet this requirement. They must be actively invlved. Key t building an effective relatinship is treating all parties with mutual respect and prfessinalism; seeking t first understand the perspectives f the ther team members; and assuring cnsistent cmmunicatins and timely fllw-thrugh. Side nte: In training grants, althugh the Grantee/Principal Investigatr and the Advcate Mentr are the key players in this relatinship, the Lead Mentr s visible supprt and guidance in securing and develping this relatinship definitely impacts its success. C-Learning: The gal is t help advcates understand the research prcess and utcmes; AND the PI and research team t learn mre abut what really matters t patients/survivrs and the urgency f finding answers fr patients. (Taken frm PCORI Patient Engagement Rubric) Budget: Reasnable cmpensatin f advcates is allwed fr mst grant mechanisms when advcates perfrm services that wuld therwise be a cntracted expense. Cmpensatin may be in the frm f salary, per-hur cmpensatin, r hnraria. Advcates may be cmpensated fr their ut-f-pcket expenses, i.e., travel, parking, printing, registratin fees, etc. If pssible, advcates shuld be prvided access t relevant literature r articles. 2

3 1. Develping the Grant Prpsal Applicant/PI Advcate Mentr Lead Mentr* Respnsibilities: As yu begin yur grant prpsal (at least 4-6 weeks prir t due date), persnally call and/r a qualified advcate (3 rd bullet in pening cmments) t invite them t wrk with yu in yur prject. If yu dn t knw an advcate: 1) visit with yur Lead Mentr t identify wh might be a gd match fr yur prject; 2) if yur institutin has an advcate grup, get in tuch with that grup s leadership; and/r 3) cntact (advcatesinscience@kmen.rg) t request a list and bis f Advcates in Science (AIS), wh have expressed an interest in wrking with researchers. When yu invite an advcate t wrk with yu, describe yur research and the particular prject yu are seeking funding fr. Offer t send any drafts that have been started. Ask the advcate what they are interested in learning. Facilitate at least ne meeting (preferably several) invlving the advcate and yu as the grant is being develped. The first meeting shuld ccur as early as pssible in the prcess (preferably shrtly after the RFA is release and prir t any substantive wrk n the design r narrative). If yu are in clse physical prximity, try t arrange fr an inpersn meeting. If nt, by phne r skype will wrk. During the first meeting, cme t a mutual agreement with all key players regarding: (1) the rles and respnsibilities f each f the parties; and (2) a timeline fr review and feedback n the prpsal at several stages f develpment. Invite yur Lead Mentr t participate in this fundatinal meeting. (See Guidelines fr Advcate Respnsibilities: Becme familiar with the prject by reading the prject prpsal, wrk with PI t define expectatins, and be hnest abut yur ability t cmmit the time and attentin needed befre cmmitting t being invlved. Review prject gals with PI, ask questins, and discuss prject meetings and expectatins. Discuss ideas fr hw t cntribute as a team member. This shuld include setting adequate timeframes fr yu t be able t thughtfully review the prpsal and share yur input with the PI. Share with yur PI, yur experience in research advcacy and cnnectin t ther survivrs/c-survivrs and/r patient advcacy rganizatins (e.g., Kmen & thers). Try t make the PI aware f generally held cncerns and hpes amng survivrs/csurvivrs/advcates regarding the tpic at hand r the field in general. This helps the PI better understand what patients believe have greatest relevance and impact. Learn the jargn (while yu help teach the PI hw t avid it when cmmunicating t peple nt in the research/medical fields). Timely and thughtfully review the grant prpsal befre it is submitted. Pay particular attentin t the Lay Abstract and Impact sectins t assure they are easily understd and cnvey why this research is imprtant t patients. (See Writing a Lay Abstract see pages 13-14) Als review and sign ff n the Respnsibilities: Encurage and facilitate the PI s cnnectin with a patient advcate(s). Be a rle mdel fr develping mutually respectful, mutually beneficial and lasting advcate researcher relatinships. If needed, cach the PI n wrking effectively with the advcate. Assure the prpsal has included r addressed the advcate s key cncerns and cmments. Wrk with PI in selecting, recruiting & effectively invlving an apprpriate advcate(s) t wrk with him/her as a mentr/research team member. Welcme the advcate t the team. Express and demnstrate yur appreciatin fr their invlvement. Share yur backgrund. Discuss yur gals, rle and expectatins related t yur mentee, his/her career, and this grant. 3

4 Invlvement (pages 9-10), Patient Advcate Invlvement Plan (pages 11-12), & PI Timeline fr Full Applicatin develpment (page 8). Kmen Schlars testimnials available upn request Optimally, g ver yur ideas fr the prpsal befre writing it, and see if the advcate has input, especially abut patient impact and the plan fr their invlvement. Assure the advcate(s) has at least 2 weeks t review and cmment n the draft prpsal, especially the Lay Abstract and Impact sectins t assure they are understandable and cmpelling t the brader survivr/c-survivr cmmunity. (See Writing a Lay Abstract dcument; see pages 13-14) C-develp and have the Advcate Mentr sign ff n the plan fr their rle. (Ideas fr advcate invlvement, see page 11-12) If a clinical trial is invlved, be sure t slicit the advcate fr ideas n tissue dnatin issues, sampling frequency, etc. Encurage the advcate(s) t always ask yu questins if he/she desn t understand smething r wuld like mre infrmatin. Pst-submissin cmmunicatins Let the Advcate Mentr & Lead Mentr knw when the grant is submitted. Offer t share the final prpsal. Share the utcme f the review with the Advcate Mentr & Lead Mentr. Share the cmments received fr everyne s imprvement. If invited t submit a full app r if funded, mutually discuss ideas fr imprving. Thank the Advcate Mentr fr their supprt and invlvement. described plan fr yur advcate rle. Discuss and prvide cmments and suggestins as needed. Where pssible, yur input shuld reflect psitins likely t be held by a wide variety f patients and advcates. When presenting highly persnal perspectives, identify them as such. Supply yur bi, and if requested, a letter f supprt. (Letter f Supprt guide, see page 15-16) Discuss what yu can d t help plan and then disseminate infrmatin abut the research and its results t the breast cancer survivr/c-survivr /advcacy cmmunity. (See Guidelines fr Advcate Invlvement (pages 9-10), Patient Advcate Invlvement Plan (pages 11-12), & PI Timeline fr Full Applicatin develpment (page 8). Kmen Schlars testimnials available upn request LGraves@kmen.rg) Where pssible, identify activities where the PI can visit with breast cancer patients, caregivers and advcates. Pst-submissin cmmunicatins After the grant is reviewed, arrange t meet with the PI. Discuss hw it did, what the cmments were, and hw t imprve it. Participate in a revisin, if that is required. If revised, read the revisin and discuss again t be sure yur suggestins were cnsidered/included. 4

5 Respnsibilities: 2. Prject Implementatin Grantee/PI Advcate Mentr Lead Mentr* Cnduct a pst-award meeting with the research/mentr team, including the advcate. Discuss, update and agree upn rles, respnsibilities and timelines. (See Guidelines fr Advcate Invlvement (pages 9-10), Patient Advcate Invlvement Plan (pages 11-12), & PI Timeline fr Full Applicatin develpment (page 8). Kmen Schlars testimnials available upn request LGraves@kmen.rg) Recmmend and assist the advcate in accessing relevant backgrund reading, websites r ther infrmatin that wuld be helpful t them in better understanding yur research r field f research, and are suitable t their level f understanding. Intrduce the advcate(s) t yur research team/ther mentrs. Invite the advcate t tur yur lab/clinic. Ensure the advcate is included in cmmunicatins with the team r mentr cmmittee. Cnduct peridic meetings ver the curse f the prject, perhaps mnthly fr the first 1-2 quarters then quarterly after that. Keep everyne in the lp n the prject s prgress and need fr revisins. Include the advcate in writing the annual prject reprts t Kmen, especially, the prtins related t their invlvement. Invite the advcate t prject and/r related meetings. Yu may als wish t include the advcate in scial gatherings f the scientific team. Invite advcates t educatinal events they might be interested in. Having Cffee is a great idea! r getting tgether utside f lab/clinic meetings is a great Respnsibilities: Becme infrmed abut the science. But d nt expect t be an expert i.e., read recmmended backgrund materials; ask the PI fr assistance if yu have difficulty understanding the basics. Never be afraid t ask if yu dn t understand. The nly stupid questin is the ne yu dn t ask. Because then yu dn t learn...and they wn t learn hw t cmmunicate in ways peple can understand. Manage yur expectatins: The rle f the advcate can and will vary even within the life f a grant. In Basic/Fundatinal research, what yu can add prbably wn t be bvius. Yu wn t always be able t ffer smething. What s imprtant is t better understand and gain an appreciatin f the research prcess.and hw slw and difficult prgress can be. It s REsearch. Yu search and then yu re-search What is learned in the prcess can be as imprtant as whether r nt it actually prves ut as expected. Seek t understand the imprtance f the research being dne and hw it might be able t ultimately impact patients. (See Guidelines fr Advcate Invlvement (pages 9-10),Patient Advcate Invlvement Plan (pages 11-12), & PI Timeline fr Full Applicatin develpment (page 8). Kmen Schlars testimnials available upn request LGraves@kmen.rg) Actively participate, as feasible (in persn r by telecnference), in meetings & discussins, especially Respnsibilities: Participate in the initial meeting with the advcate where rles, respnsibilities and timelines are updated and agreed t. At least quarterly, check-in with the advcate and PI t see hw they are wrking tgether. Review the annual prject reprts t Kmen. Mutually discuss what yu believe is wrking well and what culd wrk mre effectively. What culd all the parties d t enhance the relatinship? 5

6 venue fr discussing questins and cmplex issues. Actively engage the advcate, sliciting their input and requesting them t fllw-up n aspects f the prject/research where they may have questins r feel they can cntribute. Ensure the advcate is invlved in planning fr all prject-related clinical trials; including but nt limited t determining the schema, eligibility requirements, n trial requirements, and ut-f-pcket csts; and reviewing recruitment plans, Infrmed Cnsent, patientrelated dcuments/prcesses, and any ther patient educatin r infrmatin materials. Mutually discuss with the advcate what yu bth believe is wrking well and what culd wrk mre effectively. What culd yu each d t enhance the relatinship? thse fcusing n matters imprtant t patients. Pick yur battles i.e., distinguish between issues yu feel are extremely imprtant versus thse abut which yu might have an pinin but nt a strng ne. Be flexible and wrk t understand the ther persn s perspective when yu disagree. Participate in writing the annual prject reprts t Kmen, especially thse sectins related t yur invlvement with the prject. Offer t review grants, abstracts, presentatins, psters and articles being develped by investigatrs invlved in the prject. Actively participate in the planning fr all prject-related clinical trials. This culd include determining the schema, eligibility requirements, n trial requirements, and ut-f-pcket csts; and reviewing recruitment plans, Infrmed Cnsent dcuments/prcesses, and any ther patient educatin r infrmatin materials. Practively vlunteer fr activities yu think wuld be useful (i.e., infrmally surveying ther advcates abut a difficult issue). If pssible, ffer t cnnect the PI with the brader patient/survivr/csurvivr cmmunity. Invite him/her t jin yu fr events r t pssibly present at a meeting. Prvide timely feedback n any dcuments yu are asked t review. Be sure yu knw and adhere t deadlines. Prvide t and slicit feedback frm the PI and ther advcates t assist yu in imprving yur effectiveness and impact. Mutually discuss what yu believe is wrking well and what culd wrk mre effectively. What culd yu each d t enhance the relatinship? 6

7 3. Prject Cmpletin Grantee/PI Advcate Mentr Lead Mentr* Respnsibilities: Invlve the advcate in analyzing the results what was learned, hw des/may it ultimately impact patients. Discuss future RFAs that might build n the study s wrk. Invlve the advcate in the final prject reprt t Kmen. Invlve the advcate in writing a plain language summary f the study results. Invlve the advcate in planning and disseminating the results especially in sharing the results with the public, the patient/survivr/c-survivr cmmunity; and, if there is ne, the lcal Kmen affiliate cmmunity. This can als take the frm f wrking with the advcate t cntact lcal newspapers t participate in and be recgnized in press releases. Cnsider (if resurces exist fr travel) inviting advcate t cpresent psters/presentatins with yu. Cnsider invlving the advcate in writing publicatins (cntributing authr). Meet with the advcate and Lead Mentr t debrief n the mentrship experience t determine what wrked well, what was learned, and hw t imprve future advcate researcher relatinships. Participate in Kmen s prcess t review and enhance advcate researcher relatinships. Respnsibilities: Assist in analyzing the results what was learned, hw des/may it impact patients, and hw will the research s wrk be mved frward r used in future grant applicatins. Assist in develping the final prject reprt t Kmen. Assist in planning fr and disseminating the results. Fcus n cmmunicatins t the brader cmmunity and prviding infrmatin that helps peple better understand the research prcess and this research s ultimate impact n patients ability t feel, functin and survive. Be an ambassadr fr research. Share infrmatin that helps peple better understand the research prcess and this research s ultimate impact n patients. Meet with the PI and Lead Mentr t debrief n the mentrship experience t determine what wrked well, what was learned, and hw t imprve future advcate researcher relatinships. Participate in Kmen s prcess t review and enhance advcate researcher relatinships. Respnsibilities: Participate in the discussins with the advcate regarding the analysis f the study; manuscript develpment, authrship and acknwledgments; disseminating the results; and hw t identify and cnsider future RFAs that might build n the study s wrk. Meet with the advcate and PI t debrief n the mentrship experience t determine what wrked well, what was learned, and hw t imprve future advcate researcher relatinships. Participate in Kmen s prcess t review and enhance advcate researcher relatinships. * Lead Mentr - The Applicant/PI must prpse ONE Lead Mentr. The primary purpse f the Lead Mentr is t prvide the research, scientific, clinical, management, and leadership guidance necessary t fster the Applicant/PI s career advancement and the successful develpment f the prpsed research prject. The Lead Mentr shuld be cmmitted bth t the research training f the Applicant/PI and the prpsed research prject. 77

8 Advcate Researcher Wrking Tgether Timeline fr Full Applicatin 6-8 wk RFA Identify & meet advcate(s) Submit Receive review utcme/cmments Prepare first draft & give t advcate Receive advcate suggestins Incrprate advcate suggestins Share w/ advcate Discuss next steps 88

9 Guidelines fr Advcate Invlvement in Kmen Funded Research Kmen is strngly cmmitted t including breast cancer research advcates in the design and implementatin f Kmen-funded research prjects. Advcates prvide essential patient perspectives and are real life experts n living with breast cancer 24/7. This guide, develped by Susan G. Kmen Advcates in Science (AIS), suggests ways t effectively invlve advcates in Kmenfunded research. Fr mre assistance in identifying trained advcates r questins abut invlving advcates in a research prject, please cntact advcatesinscience@kmen.rg. Wh can serve as a research advcate? Advcates wh have been diagnsed with breast cancer; have a knwn genetic mutatin; r have a strng persnal cnnectin r experience with breast cancer (i.e., family, friend, caregiver). Advcates must represent a cllective breast cancer patient/survivr perspective (i.e., insights and experiences f ther breast cancer survivrs). Advcates shuld be actively invlved in the brader breast cancer research advcacy cmmunity. Advcates shuld have a basic understanding f the science f breast cancer and the peer review research prcess. Advcates are nt required t be an AIS member. Infrmatin abut AIS and jining AIS is at Identifying a research advcate The AIS prgram has advcate members acrss the US and in ther cuntries. Fr help in finding an advcate, cntact ur prgram staff at advcatesinscience@kmen.rg. Ask fr recmmendatins frm cllabratrs, wh have wrked with research advcates. Hw research advcates can be effectively invlved in research Research advcates shuld be invlved early (and ften) in develping a research prject. Researchers and advcates shuld develp a mutually beneficial relatinship. Fr example: researchers educate advcates abut their prject; advcates educate researchers abut patients cncerns and experiences. Fr a cpy f the Building advcate researcher relatinships t strengthen research tlkit, cntact advcatesinscience@kmen.rg. Advcates can review early drafts f applicatins t identify pssible patient cncerns. D nt wait until the last minute t wrk with an advcate. Be respectful f her/his time, cmmitment and expertise. Advcates can prvide regular input abut the prject. As advcates learn mre abut a research prject, they may identify additinal ways t assist. Their cllective patient perspectives help fcus the research n what matters t patients. Researchers and advcates shuld cmmunicate regularly t keep infrmed abut the prject s prgress. Use , phne calls, and team meetings whatever wrks best fr the researcher and the advcate. Advcates wrk clsely with researchers t ensure terminlgy used is clear fr all audiences. Fr a cpy f Writing a Lay Abstract, cntact advcatesinscience@kmen.rg. Tax dllars, dnrs and investrs fund research. Effectively sharing results with the general public benefits the breast cancer research field. Patients and funders want t knw hw yur research may ultimately imprve patients care and survival. Advcates and researchers shuld wrk tgether t determine the advcate s rle and respnsibilities. Fr testimnials frm Kmen Schlars abut hw they have invlved advcates, cntact advcatesinscience@kmen.rg. What rles can a research advcate fill n a research prject? Advcates have a wide range f skills, experience and knwledge t enhance a research team s wrk. Advcates may have specific suggestins n hw they can cntribute t a prject. Sme pssibilities are described belw. Fr a cpy f the Patient Advcate Invlvement Plan Suggestins fr Researchers, cntact advcatesinscience@kmen.rg. Pssible Advcate Rles in the Applicatin s Develpment Prvide feedback n a prject s impact n patients by identifying the research s translatin ptential (i.e., hw meaningful r imprtant the utcme(s) culd be t patients). Wrk with researchers t develp and review the applicatin s Innvatin and Significance sectin. Advcates can help assure this sectin highlights the prject s imprtance t breast cancer patients and their families. Wrk with the research team t develp and review the lay abstract and ther prtins f the applicatin t assure terminlgy is understandable t a general, nn-scientific audience; and cnveys the prject s ptential verall impact n breast cancer research and patient care. Help define their rle during the prject s implementatin, annual reprting, and articulating the impact f the research findings. 9

10 Pssible Rles f Advcates in Research Prject Implementatin Wrk with researchers t develp plain language summaries highlighting the prject s ptential impact n patients. Be a cmmunity ambassadr speaking abut the research and its ptential significance t patients. Public speaking engagements are an excellent pprtunity fr advcates and researchers t c-present. Refer t Kmen Schlar Testimnials fr further guidance. Cntact advcatesinscience@kmen.rg fr these testimnials. Assist researchers in cnnecting with their lcal Kmen Affiliate and the brader breast cancer cmmunity. Wrk with researchers t create educatinal materials, events, webinars and telecnferences fr lcal, reginal, and natinal grups and rganizatins t infrm them abut the research and its imprtance t breast cancer patients. Participate in research prject team s update/planning meetings, seminars and ther events essential t the prject s success. Pssible Rles f Advcates in a Clinical Prject (invlving clinical trials) Wrk with the prject team t design and develp the clinical trial t identify ptential barriers t accrual and/r retentin. Help develp patient-fcused educatin materials. Fr instance: c-authr study brchures t give a shrt, easy-tunderstand descriptin f the clinical trial. Review the clinical trial s prpsed design. Prvide a breast cancer patient pint-f-view regarding eligibility criteria, frequency f invasive testing, csts, lgistical requirements, and patient feelings when deciding whether t participate. Help define hw the patient experience will be mnitred. Fr example, develping patient reprted utcmes (PROs) r questinnaires; r identifying tpics fr persnal interviews. As apprpriate, prvide assistance and supprt thrughut the study accrual perid, including ways t address recruitment r retentin issues. Help develp and review the language used in Infrmed Cnsent frms, questinnaires, and ther dcuments fr patients. Advcates help maximize readability and sensitivity t patient cncerns and needs. Review the Infrmed Cnsent prcess t assure patients have ample pprtunities t discuss and truly understand the nature f the research, what they are expected t d, the risks/benefits, their csts, and what infrmatin they will receive n the clinical trial s prgress, cmpletin, and results. Pssible Rles f Advcates in a Training Prject fr Junir Faculty, Pstdctral Researchers, and Graduate Students Advcates can help make a research prject mre patient-fcused and likely t psitively impact the lives f breast cancer patients. Researchers can learn mre abut what is critical t patients. Prvide a patient pint-f-view in mentring cmmittees and prject presentatins. Advcates add a different, mre pignant perspective t yur prject and its relevance t patients. Review publicatins and cmmunicatins. Advcates help clarify why the research is critical and relevant t patients and the cmmunity. Hw ften shuld the research team meet with the research advcate(s) listed in the applicatin? Frequency f meetings shuld be driven by the prject plan and the schedules f the peple invlved. The applicatin shuld include mutually agreed upn details n hw ften the research team will meet with the advcate(s) and the type(s) f meetings that will ccur. Shuld research advcates be cmpensated? Cmpensatin will vary depending n the extent and nature f the advcate s invlvement. Reasnable cmpensatin is allwed when advcates perfrm services that wuld therwise be a cntracted expense. Cmpensatin may be a salary, per-hur cmpensatin, r hnraria. Offer t cver ut-f-pcket expenses incurred t attend meetings and cnferences identified in the prject applicatin (e.g., travel expenses, cnference fees, mileage, parking, etc.). All meetings and cnferences must be directly related t the prpsed training r research plan. Researchers and advcates shuld agree n cmpensatin and expenses t be reimbursed. These shuld be identified and supprted in the budget justificatin sectin f the applicatin, especially prject and/r cnsulting fees. Advcates must prvide a Letter f Supprt and Bisketch A bisketch (n mre than 5 pages in an NIH r ther acceptable frmat) shuld be submitted fr advcates listed as key members f the research team. Examples are prvided n the Kmen website at All advcates, listed n yur prject, must submit a Letter f Supprt. Their letter shuld identify their level f cmmitment t and rle(s) in the prject. An example is prvided n the Kmen website at 10

11 Patient Advcate Invlvement Plan -Suggestins fr Researchers OVERVIEW Kmen has a strng cmmitment t including breast cancer research advcates t prvide the patient perspective in the design and implementatin f research prjects funded thrugh the Kmen Research Grant Prgram. A Patient Advcate Invlvement Plan sectin must be cmpleted in the Applicatin Narrative. Fr assistance in identifying trained advcates r t discuss including advcates in the prpsed research prject, cntact advcatesinscience@kmen.rg. Belw are sme ideas and suggestins t cnsider as yu develp yur Patient Advcate Invlvement plan. It is nt necessary t include every item belw, just the items that are relevant t yur prject. Refer t the Guidelines fr Advcate Invlvement in Kmen Funded Research dcument fr additinal infrmatin. Research Invlvement Describe hw an advcate prvided input while yu were writing yur applicatin. Fr example, mentin if they reviewed and edited sectins f the applicatin. Discuss whether it was valuable and hw it helped yu strengthen the applicatin especially with regard t the ptential impact yur research will have n patients. Describe the advcate s rle as a member f yur Mentr Cmmittee (if applicable), and whether the advcate will be invited t attend all Mentr Cmmittee meetings. Describe if the advcate will be invited t attend any meetings/seminars where research described in yur prpsal will be presented. Discuss hw ften these will ccur. If yur research prject includes a clinical trial, describe hw the advcate will assist yu in develping the trial design. Discuss hw the advcate may assist yu in identifying patient-fcused benefits and/r risks fr participants, and ptential challenges r barriers t accrual. Describe hw yu will update the advcate n prgress f yur research. It is suggested that updates ccur at least annually (r mre ften) t seek input abut hw the wrk that has been cmpleted s far is relevant t patients. Als yu can ask the advcate fr feedback abut what is planned fr the next year. Cmmunity Invlvement If the advcate is invlved with the lcal Susan G. Kmen Affiliate, they culd assist yu in making a cnnectin with the Affiliate and ffer pprtunities t participate in cmmunity events, like presenting yur research as a pster r talk t cnvey the significance f yur wrk fr the patient cmmunity. Describe hw the advcate culd assist yu in develping and presenting yur research in plain language. Experience f Patient Advcate Mentr Describe the strengths the advcate will bring t yur research. Yu can find infrmatin abut their previus experiences in their bisketch. If yu have prir experience wrking with the advcate, describe yur experience and what was gained during cllabratin. 11

12 Persnal Impact n yur Career Develpment Add a persnal statement n why invlving a patient advcate in yur research and training will impact yur individual understanding f breast cancer. Describe hw wrking with a patient advcate may impact yur future wrk. Describe hw yu will cntinue invlving patient advcates even after Kmen funding has ended. Describe hw yur experience with an advcate may influence yur future career in breast cancer research. In what way will having an advcate mentr influence yur career decisins abut cntinuing t cnduct breast cancer research? FY17 Patient Advcate Invlvement Plan -Suggestins fr Researchers Page 2 f 2 12

13 Writing a Lay Abstract A patient-fcused summary abut yur research What d yu hpe t prve? Why is it imprtant t patients? Why d yu think it will wrk/be successful? Hw may it ultimately impact hw peple feel, functin, r survive? Writing an abstract in plain, everyday language is nt easy. Especially, when yu regularly use scientific r medical language. Key things t cnsider: Think abut yur audience. Use language they can easily understand and relate t. Hw wuld yu explain yur research t yur mm in a way she can understand what it is and why it is imprtant? Chse cmmn, everyday wrds. Avid research r medical jargn and acrnyms. When yu use these terms everyday, yu take them fr granted. Yu frget thers many nt understand r relate t what they mean. If yu use jargn, define it in plain language and prvide a real life example, analgy, r visual aid. Keep it shrt and t the pint! Try t keep sentences t 15 wrds r less, paragraphs brief, and verall text cncise. If a sentence has cnjunctins (i.e., but, hwever, and) r semiclns, break it int tw sentences. And it s kay t start a sentence with these wrds. Organize and filter cntent with yur reader s needs in mind. Try t see it frm their perspective. Hw wuld yu explain it t a patient in a respectful way that gains their understanding? Use clear and descriptive headings. Start with a title r shrt paragraph highlighting what yur research is intended t discver. It shuld be in clear, everyday terms. The reader shuldn t have t g n a scavenger hunt t figure ut what this abstract is abut. Use meaningful headings t describe the cntent f different sectins r paragraphs. This gives yur readers rad signs t help them easily navigate thrugh yur abstract. Rad signs can walk the reader lgically thrugh: What are yu prpsing t d? Why are yu ding it? Why d yu think it will wrk? What patient-fcused difference d yu hpe it will make? Include nly the infrmatin yur audience really needs t knw. What is essential t helping them understand what I am ding and why? Put lng lists f items int bulleted lists where practical. Use numerical lists when the items need t be understd r cmpleted in rder. Use cmplete sentences. Every sentence shuld have a nun and a verb. Use apprpriate punctuatin & grammar t enable the reader t easily read and cmprehend what yu are trying t explain. Spell check!. 13

14 When describing yur intended utcme r impact, avid using cnclusive, unqualified terms. Stating yur research will/wuld/culd is misleading. It suggests that if yu d this research it will be s. If yu knw what the utcme will be, the research is nt necessary. Use qualifiers If this research is successful, It may, This research seeks t determine whether r nt, etc. When yu think yu have the final dcument Use fresh eyes when yu edit r prfread it. Set the dcument aside and prfread it again after taking a break. Read it alud. This is ne f the best ways t discver errrs, incmplete thughts, r incrrect grammar. Take it fr a test drive! Ask smene unfamiliar with the research wh is nt frm the medical r research field, t read yur abstract. This is ne f the quickest ways t discver what yu have nt made clear. Ask them: Please describe in yur wn wrds, what yu think this research is abut. And why it is imprtant. Additinal Tls/Resurces Much f this infrmatin has been taken frm: The PRISM Readability Tlkit. This is a free resurce f the Prgram fr Readability In Science and Medicine (PRISM). The purpse f the initiative is t imprve the quality f print materials prvided t research participants. Hwever, it is als an excellent resurce fr thse wishing t write readable, patient-centered research dcuments, such as lay abstracts. Transcend Readability Tls Readability Frmulas Checking grammar GrammarCheck Grammarly Susan G. Kmen ffers sme excellent guidance and links n: Grant writing - Example Original Text (12th grade) This brchure includes tips that can help yu prevent errrs in yur surgery and make sure that yu have the crrect prcedure perfrmed at the crrect place, r site, n yur bdy. Plain Language (6th Grade) Mistakes smetimes happen during surgery. Dctrs may d the wrng surgery r perate n the wrng part f yur bdy. Or they perate n the wrng persn. Frm Plain Language = Better Health Care, Transcend website 14

15 Patient Advcate Letter f Supprt OVERVIEW As a part f the researcher s applicatin, yur letter f supprt will demnstrate yur enthusiasm and supprt fr the prpsed research prject. Yur letter can help strengthen the applicatin by prviding the advcate perspective n why the research is imprtant t patients. It is an imprtant piece f the applicatin package that researcher and advcate peer review panelists find very helpful. Belw are sme ideas and suggestins t cnsider as yu develp yur letter f supprt. Be sure that the cntent f yur letter is tailred t the prject. It is nt necessary t include every item belw, just the items that are relevant t the prject yu are supprting. Sme additinal idea generatrs are cntained in the Guidelines fr Advcate Invlvement in Kmen Funded Research dcument. Frmat Use persnal letterhead if yu have it. If nt, include yur name, address, phne # and address. Maximum f tw pages, include page number if mre than ne page Date the letter Address the letter t Susan G. Kmen, Dallas, TX Salutatin: Dear Kmen Reviewers Sign the letter and either fax it r submit a scanned cpy t the researcher; yur signature is needed in the submissin Intrductry Paragraph Include the name f the researcher and the title f the applicatin Indicate yur cmmitment t serving as an advcate n the prject Bdy f Letter (2-4 paragraphs) Research Give a shrt ne- r tw-sentence summary f the research Describe why yu believe the research is imprtant t patients Yur Advcacy Experience Survivrship Advcate invlvement (rganizatin, yur title if yu have ne, areas f fcus) Invlvement with the lcal Susan G. Kmen Affiliate, including any cmmunity events Reasns why yu are interested in supprting breast cancer research Experience that yu have in cllabrating with researchers Experience that yu have in serving as an advcate r cnsumer reviewer in the peer review prcess (Kmen, DD, ther) The Researcher Describe hw yu have wrked with the researcher t-date n this prject If yu have wrked with the researcher befre, briefly describe yur experience Cmment n the strengths f the applicant that yu have bserved, and indicate cnfidence in their ability t cnduct the research Yur Rle if Prject is Funded Discuss hw yu will cntinue t prvide input n patient perspective thrughut the prject, and in 155

16 what way(s) Describe the nature f yur rle and the frequency f yur meetings as a member f the researcher s Mentr Cmmittee. Describe if yu will attend and/r c-present with the researcher at any meetings/seminars where research results will be shared. Include cmments regarding where the presentatins r meetings wuld ccur, and hw ften they might happen. Discuss hw yu will keep current n prgress f the research, including nature and frequency f meetings. Discuss hw yu will assist the researcher in cnnecting with Kmen and the breast cancer cmmunity. Clsing Paragraph Discuss yur perceptin f the impact the research will have n patients, shrt- and lng-term Describe why yu believe that the research shuld be cnducted and why is shuld be funded Restate yur cmmitment t supprt and cllabrate with the researcher n the prject Thank Kmen fr their cnsideratin f the applicatin FY17 Patient Advcate Letter f Supprt Page 2 f 2 166