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prettyinpale.org



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Titlepretty in pale

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Description pretty in pale is a blog dedicated to raising awareness about melanoma and helping young women love the skin they were born in.

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Keywords tanning, skin cancer, melanoma, pale skin, young woman melanoma, melanoma blog, melanoma survivor
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monday, november 28, 2016
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a patient’s perspective on a patient-centered conference: recap of #pcori2016 (part 2)
a patient’s perspective on a patient-centered conference: recap of #pcori2016 (part 1)
solsurvivors oregon receives $50,000 to partner with researchers on melanoma study
a patient’s perspective on a patient-centered conference: highlights from #pcori2015 (part 2)
a patient’s perspective on a patient-centered conference: highlights from #pcori2015 (part 1)
sunscreen review: supergoop setting mist with rosemary, spf 50
inspiration board: under the sea baby shower
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katie@prettyinpale.org mailto:katie@prettyinpale.org
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Linki zewnętrzne

- http://www.prettyinpale.org/
a patient’s perspective on a patient-centered conference: recap of #pcori2016 (part 2) http://www.prettyinpale.org/2016/11/a-patients-perspective-on-patient_28.html
check out my summary of day 1 of pcori's annual meeting. http://www.prettyinpale.org/2016/11/a-patients-perspective-on-patient.html
- https://1.bp.blogspot.com/-vn3ggd1ffvq/wdyozh-tqti/aaaaaaaaf7e/hbs4fl_ybtutpjc03z91ktxcpbmlgg6ugclcb/s1600/img_8440.jpg
patient-centered outcomes research institute (pcori) annual meeting http://www.pcori.org/events/2016/2016-pcori-annual-meeting
mary woolley http://www.researchamerica.org/mary-woolley
- https://2.bp.blogspot.com/-owzapakat-w/wdysbxhp8qi/aaaaaaaaf7q/gkxrvymnvkwnrktmk26mbx5p7raxa7xigclcb/s1600/img_8441.jpg
anna renault http://www.annarenault.com/
jama http://jamanetwork.com/journals/jama
the bmj http://www.bmj.com/thebmj
plos medicine http://journals.plos.org/plosmedicine/
patient perspective http://blogs.bmj.com/bmj/category/patient-perspectives/
our study http://www.wearesolsurvivors.org/patientcenteredresearch/
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major themes and takeaways http://www.prettyinpale.org/2015/10/a-patients-perspective-on-patient_20.html
pipeline to proposal team http://www.prettyinpale.org/2016/07/solsurvivors-oregon-receives-50000-to.html
pipeline to proposals program http://www.pcori.org/funding-opportunities/programmatic-funding/pipeline-proposal-awards
learn more http://www.wearesolsurvivors.org/events/
katie wilkes https://www.blogger.com/profile/18286648146803495117
5:04 pm http://www.prettyinpale.org/2016/11/a-patients-perspective-on-patient_28.html
2 comments http://www.prettyinpale.org/2016/11/a-patients-perspective-on-patient_28.html#comment-form
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melanoma research http://www.prettyinpale.org/search/label/melanoma%20research
patient advocacy http://www.prettyinpale.org/search/label/patient%20advocacy
patients making a difference http://www.prettyinpale.org/search/label/patients%20making%20a%20difference
pcori http://www.prettyinpale.org/search/label/pcori
a patient’s perspective on a patient-centered conference: recap of #pcori2016 (part 1) http://www.prettyinpale.org/2016/11/a-patients-perspective-on-patient.html
- https://3.bp.blogspot.com/-5uaocyi8cao/wdtgzlcm-qi/aaaaaaaaf6m/su7r-gc6pyglfvr-wcixjat4u4uuopchqclcb/s1600/img_8448%2b%25281%2529.jpg
patient-centered outcomes research institute (pcori) annual meeting http://www.pcori.org/events/2016/2016-pcori-annual-meeting
blog posts http://www.prettyinpale.org/2015/10/a-patients-perspective-on-patient.html
colorado foundation for public health & the environment http://www.cfphe.org/
stephanie buxhoeveden http://www.pcori.org/blog/when-clinician-becomes-patient
patient-centered research http://www.wearesolsurvivors.org/patientcenteredresearch/
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solsurvivors team http://www.wearesolsurvivors.org/
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tony coehlo http://history.house.gov/people/detail/11178
read more about days 2 and 3! http://www.prettyinpale.org/2016/11/a-patients-perspective-on-patient_28.html
katie wilkes https://www.blogger.com/profile/18286648146803495117
5:32 pm http://www.prettyinpale.org/2016/11/a-patients-perspective-on-patient.html
0 comments http://www.prettyinpale.org/2016/11/a-patients-perspective-on-patient.html#comment-form
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melanoma research http://www.prettyinpale.org/search/label/melanoma%20research
patient advocacy http://www.prettyinpale.org/search/label/patient%20advocacy
patients making a difference http://www.prettyinpale.org/search/label/patients%20making%20a%20difference
pcori http://www.prettyinpale.org/search/label/pcori
solsurvivors oregon receives $50,000 to partner with researchers on melanoma study http://www.prettyinpale.org/2016/07/solsurvivors-oregon-receives-50000-to.html
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project i've been leading http://www.pcori.org/research-results/2016/developing-infrastructure-patient-centered-melanoma-research-tier-iii
patient-centered outcomes research institute (pcori) http://www.pcori.org/
melanoma community registry http://www.ohsu.edu/xd/health/services/dermatology/war-on-melanoma/melanoma-community-registry.cfm
melanoma community research forum http://www.solsurvivorsusa.org/past-events.html
solsurvivors oregon http://solsurvivorsusa.org/oregon.html
katie wilkes https://www.blogger.com/profile/18286648146803495117
7:30 pm http://www.prettyinpale.org/2016/07/solsurvivors-oregon-receives-50000-to.html
0 comments http://www.prettyinpale.org/2016/07/solsurvivors-oregon-receives-50000-to.html#comment-form
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community http://www.prettyinpale.org/search/label/community
melanoma http://www.prettyinpale.org/search/label/melanoma
patient advocacy http://www.prettyinpale.org/search/label/patient%20advocacy
pcori http://www.prettyinpale.org/search/label/pcori
research http://www.prettyinpale.org/search/label/research
a patient’s perspective on a patient-centered conference: highlights from #pcori2015 (part 2) http://www.prettyinpale.org/2015/10/a-patients-perspective-on-patient_20.html
check out my summary of day 1 of pcori's annual meeting. http://www.prettyinpale.org/2015/10/a-patients-perspective-on-patient.html
- http://3.bp.blogspot.com/-cnwvlg_qemk/virg65fau7i/aaaaaaaacey/8uou43hdybk/s1600/img_5533.jpg
patient-centered outcomes research institute http://www.pcori.org/
pipeline to proposals http://www.pcori.org/funding-opportunities/programmatic-funding/pipeline-proposal-awards
read more about our project. http://www.prettyinpale.org/2015/03/facilitating-survivor-involvement-in.html
- http://2.bp.blogspot.com/-luncfgdap18/virju02kyei/aaaaaaaaceo/syr6rx5xday/s1600/capture.png
magazine article http://time.com/4057310/breast-cancer-overtreatment/
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first recap post http://www.prettyinpale.org/2015/10/a-patients-perspective-on-patient.html
www.pcori.org http://www.pcori.org/events/2015/pcori-annual-meeting
katie wilkes https://www.blogger.com/profile/18286648146803495117
7:26 pm http://www.prettyinpale.org/2015/10/a-patients-perspective-on-patient_20.html
2 comments http://www.prettyinpale.org/2015/10/a-patients-perspective-on-patient_20.html#comment-form
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melanoma http://www.prettyinpale.org/search/label/melanoma
patient advocacy http://www.prettyinpale.org/search/label/patient%20advocacy
patients making a difference http://www.prettyinpale.org/search/label/patients%20making%20a%20difference
pcori http://www.prettyinpale.org/search/label/pcori
research http://www.prettyinpale.org/search/label/research
a patient’s perspective on a patient-centered conference: highlights from #pcori2015 (part 1) http://www.prettyinpale.org/2015/10/a-patients-perspective-on-patient.html
- http://4.bp.blogspot.com/-e9mafdiqssc/vh3twbkwpki/aaaaaaaacdo/c3mjur0k5bg/s1600/img_5538.jpg
- http://4.bp.blogspot.com/-9rmn2zcmurs/vh3w5byrwri/aaaaaaaacd8/jxmxa_ieljw/s1600/img_5520.jpg
think about diagnostic tests and medical treatments http://consumerhealthchoices.org/wp-content/uploads/2013/06/cwpostergeneralsmall.pdf
katie wilkes https://www.blogger.com/profile/18286648146803495117
9:14 pm http://www.prettyinpale.org/2015/10/a-patients-perspective-on-patient.html
1 comments http://www.prettyinpale.org/2015/10/a-patients-perspective-on-patient.html#comment-form
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conference http://www.prettyinpale.org/search/label/conference
patient advocacy http://www.prettyinpale.org/search/label/patient%20advocacy
patients making a difference http://www.prettyinpale.org/search/label/patients%20making%20a%20difference
pcori http://www.prettyinpale.org/search/label/pcori
research http://www.prettyinpale.org/search/label/research
sunscreen review: supergoop setting mist with rosemary, spf 50 http://www.prettyinpale.org/2015/06/sunscreen-review-supergoop-setting-mist.html
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supergoop.com http://supergoop.com/
sephora.com http://sephora.com/
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katie wilkes https://www.blogger.com/profile/18286648146803495117
9:01 pm http://www.prettyinpale.org/2015/06/sunscreen-review-supergoop-setting-mist.html
12 comments http://www.prettyinpale.org/2015/06/sunscreen-review-supergoop-setting-mist.html#comment-form
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beauty http://www.prettyinpale.org/search/label/beauty
makeup http://www.prettyinpale.org/search/label/makeup
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summer http://www.prettyinpale.org/search/label/summer
sun protection http://www.prettyinpale.org/search/label/sun%20protection
sunscreen http://www.prettyinpale.org/search/label/sunscreen
sunscreen reviews http://www.prettyinpale.org/search/label/sunscreen%20reviews
inspiration board: under the sea baby shower http://www.prettyinpale.org/2015/06/inspiration-board-under-sea-baby-shower.html
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paperless post https://www.paperlesspost.com/cards/section/invitations
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catchmyparty.com http://catchmyparty.com/parties/under-the-sea-water-party
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monday, november 28, 2016 a patient’s perspective on a patient-centered conference: recap of #pcori2016 (part 2) check out my summary of day 1 of pcori's annual meeting. panelists discuss how to recruit participants for clinical trials at #pcori2016. day 2 on day 2 of the patient-centered outcomes research institute (pcori) annual meeting, i was excited to attend the breakout session on planning for successful recruitment in patient-centered clinical trials. as partners in the research process, patients and community organizations can play an important role in recruiting for clinical trials. we might share information about specific trials with our networks, or we can advise researchers on recruitment strategies and patient-friendly informed consent language. the session kicked off with a presentation by mary woolley, head of research!america. i was thrilled to see her speak in person because aside from being very accomplished, her organization does important work raising public and policymaker awareness about the importance of medical research. research!america conducts public opinion surveys on clinical trials and has found that although the vast majority of americans have not participated in a research study, many of them would consider participating if they were asked to do so by someone they trust. alarmingly, a large percentage of the population also believes that you can be enrolled in a clinical trial without your knowledge, which is very much untrue. let's make people who participate in clinical trials as admired as those who donate blood, mary woolley said. another presenter during the clinical trials session described a pcori-funded project that is comparing the effectiveness of antibiotics vs. surgery for appendicitis. can you imagine being able to avoid surgery if you suddenly came down with appendicitis? this seems completely unheard of. and yet research in europe suggests that antibiotics could be a viable alternative to surgery for these patients. the project's leader, dr. david flum, said this is exactly the type of "big question" that pcori aims to solve. one that has a real impact on the health and quality of life of large numbers of people. conference attendees line up to ask questions of the friday afternoon plenary panel. later in the day, the afternoon plenary session highlighted some of the unique work pcori is funding for people with multiple chronic conditions. most clinical trials have strict eligibility criteria and this tends to exclude people who suffer from more than one disease or condition. for example, you may not be eligible to participate in a particular cancer clinical trial if you've already been diagnosed with high blood pressure. designing trials for patients with multiple conditions is not without its challenges, but it's addressing a real need that was eloquently articulated by panelist anna renault. on friday, i also had a chance to hear from a panel of editors representing a variety of scientific journals including jama, the bmj, and plos medicine. during this session, i was pleased to hear about the innovative ways the bmj is integrating the patient perspective into its science-focused publication. of course, pcori-funded projects are required to think beyond just scientific journals for sharing the results of their work, but it was helpful to learn more about what each of these journals is looking for, and how i might be able to support my research partners on publishing the results of our study in the future. day 2 concluded with a "tweet up," where i had a chance to meet face-to-face with some of the people i'd been chatting with online throughout days 1 and 2. never underestimate the power of connecting with fellow conference attendees. you never know what you might learn! a reminder from one of the presenters that we are part of something really, really big. day 3 on the final day of the pcori annual meeting, i participated in an all-day workshop called "getting to know pcori: from application to closeout." the purpose of this workshop, which pcori has held in other cities as well, is to help potential applicants get a better understanding of what pcori is looking for so that they can be better equipped to apply for funding. the first step toward applying for pcori funding is submitting a letter of intent. the letter of intent, also known as an loi, describes a problem you are trying to solve and a high-level overview of how you plan to solve it. if program staff determine your idea fits within the parameters of their program, they'll invite you to submit a full, detailed proposal. surprisingly, a large number of lois do not meet pcori's minimum criteria. for this reason, it's important to check with a program officer early in your planning process to make sure you're targeting the correct program. the workshop continued with numerous other practical hints, including the importance of describing why you picked the comparators you did and demonstrating that you can hit the ground running on day one of your contract. also, don't forget to work with the most up-to-date version of the loi template on the pcori website! conclusion and takeaways many of the major themes and takeaways i wrote about at the 2015 meeting held true at this year's conference as well. this year, though, as our pipeline to proposal team gets closer to submitting our loi in early 2017, things seem to hit a bit closer to home. never in a million years did i imagine that i would play such a significant role in developing a melanoma research proposal--from helping choose the topic, to narrowing it down to three specific aims, to developing a robust community engagement strategy. i was inspired by all of the patient co-investigators who presented at the conference this year, and i hope i'll be among them in the future. after spending almost three years in the pipeline to proposals program, i can say with certainty that our team has a significant competitive advantage when it comes to patient-centeredness and patient engagement. yes, we're still learning, but patients and family members have been integrally involved in the process from start to finish. will we succeed in obtaining larger-scale pcori funding? that's for the peer reviewers to decide, but i'm hopeful. at the end of the day, regardless of what happens, i'm thankful to have been part of the process, and i continue to leave every pcori conference feeling energized and inspired. want to learn more about our planned application to pcori in 2017? join us at our melanoma community research forum on saturday, jan. 21, 2017 from 8:30 a.m. to 1 p.m. we'll be meeting in portland, bend, and corvallis, oregon. learn more. posted by katie wilkes at 5:04 pm 2 comments email thisblogthis!share to twittershare to facebookshare to pinterest labels: melanoma research, patient advocacy, patients making a difference, pcori tuesday, november 22, 2016 a patient’s perspective on a patient-centered conference: recap of #pcori2016 (part 1) our view from the pcori 2016 annual meeting conference. for the past two years, i’ve been fortunate to receive a scholarship to attend the patient-centered outcomes research institute (pcori) annual meeting in washington, d.c. this conference, which started in 2015, brings together over 1,000 patients, caregivers, researchers, clinicians, policy makers, insurers and other health care stakeholders in one room to figure out how we can work together to improve the health and well-being of our communities. at pcori meetings, we spend a lot of time talking about how we can translate what we learn from clinical trials into the real world. in this spirit of openness and transparency, i wrote two blog posts in response to the 2015 pcori annual meeting, half expecting no one would ever read them. i had no idea how many people would end up reading those posts, including a number of staff members at pcori and several of my friends at the colorado foundation for public health & the environment! at the close of the first day of pcori’s 2016 annual meeting, i’m pleased to report that pcori seems to be listening to to our feedback. last year, several of us noted that we’d love to see more patients and caregivers during the conference’s plenary sessions. this year, stephanie buxhoeveden gave a phenomenal opening keynote chronicling her journey from ambitious nursing student to ms patient to nurse for ms patients. while we often characterize ourselves as either patients or researchers, her talk was a great reminder that many of us wear multiple hats. in fact, i would argue that those of us who wear multiple hats--whether it’s clinician and researcher or patient and health care stakeholder--are inherently better at patient-centered research because we can draw from our diverse experiences and bridge the gap between disparate stakeholder groups. there was much twitter chat about this topic throughout the conference, so i hope to see the "multiple hats" topic get more attention at future pcori meetings. proudly representing my solsurvivors team at #pcori2016. the panel discussion following stephanie’s talk included individuals representing various perspectives--a self-described “good-looking mexican guy in a wheelchair,” an advocate for family caregivers, a legislative advocate, a patient co-investigator, and a nurse navigator. each panelist was an articulate, insightful contributor, and while plenary panels tend to be more theoretical than practical, i found the conversation had a few solid takeaways, including: we need to educate patients about clinical trials before they’re diagnosed with a disease. it’s not enough to educate patients on how to work with researchers. we need to educate (and incentivize!) researchers on how to best work with patient advocates. if you neglect the family caregiver, you’re creating another patient. prior to thursday’s plenary session, those of us who received a scholarship to attend the meeting were invited to participate in a pre-conference workshop at a neighboring conference center. this workshop included a variety of short presentations from pcori staff members, funded researchers and patient partners, and others. during the workshop, we heard from pcori’s engagement officer that some communities have a longstanding distrust of the health care system and medical research in general. patient engagement can help build trust to breakthrough to those who have been underrepresented in research. although there’s no “one size fits all” approach to engagement, the most successful partnerships do tend to have a few things in common. this includes trust, respect, authenticity, open communication, and a clear division of labor. a snapshot of thursday's plenary panel. we also spent some time talking about how to build your social media presence as a patient advocate. this part of the presentation was a bit rudimentary for those of us who are already very active on social platforms, but it was important information to share with the group at large. although there’s plenty of work i’ve done face-to-face, when it comes to melanoma advocacy, i’ve made a tremendous amount of connections sharing my story through this blog, twitter, and on facebook. there’s no way i would be nearly involved in outreach or research advocacy today if it weren’t for social media. for those who are new to social media, pcori’s social strategist encouraged starting conversations with others you follow on social sites and adding your thoughts to existing discussions. opening up in a public forum about your disease experience can be pretty unnerving, but in my own experience, other advocates and “influencers” tend to be pretty approachable and helpful for new folks who are just getting started. the last presenter at the scholarship pre-conference session was tony coehlo, former u.s. representative and sponsor of the americans with disabilities act. like many of the other presenters, mr. coehlo opened his talk by sharing his own experience as a patient, which ultimately lead to a very active political career. his story, like many of the others we heard throughout the day, was a great reminder to all of us that while the work we do can be really, really challenging, it’s important work, and if we’re ever going to see real change in the u.s. health care system, we’re the ones who need to make it happen. read more about days 2 and 3! posted by katie wilkes at 5:32 pm 0 comments email thisblogthis!share to twittershare to facebookshare to pinterest labels: melanoma research, patient advocacy, patients making a difference, pcori thursday, july 21, 2016 solsurvivors oregon receives $50,000 to partner with researchers on melanoma study the solsurvivors community engagement committee. exciting news! the project i've been leading in collaboration with oregon health & science university and solsurvivors has been selected to receive $50,000 from the patient-centered outcomes research institute (pcori). funds will be used to develop a research study that reflects the needs and interests of melanoma patients and their families. the award comes from pcori’s pipeline to proposal program, which enables individuals and groups who are not typically involved in the scientific research process to develop partnerships with researchers and spearhead the design of a patient-centered research proposal. since 2013, we have been awarded a total of $90,000 to build a community engagement committee and support the ohsu department of dermatology on engagement activities related to the melanoma community registry. last fall, our project team jointly hosted a melanoma community research forum, where over 90 participants gathered in portland and bend to learn about the latest melanoma research and participate in small-group discussions about their experience with melanoma. themes identified during the event are being used to shape a collaborative research project, as well as a community event to be held in november 2016. want to get involved? send me a note at katie@prettyinpale.org. about solsurvivors oregon solsurvivors oregon is a network of melanoma survivors, family, and friends who are passionate about transforming the way we prevent, diagnose, and treat melanoma. we coordinate community events to educate patients and their families, advocate for sun safety, and are working closely with researchers at ohsu to wage a war on melanoma. about pcori pcori is an independent, non-profit organization authorized by congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. pcori is committed to seeking input from a broad range of stakeholders to guide its work. posted by katie wilkes at 7:30 pm 0 comments email thisblogthis!share to twittershare to facebookshare to pinterest labels: community, melanoma, patient advocacy, pcori, research tuesday, october 20, 2015 a patient’s perspective on a patient-centered conference: highlights from #pcori2015 (part 2) check out my summary of day 1 of pcori's annual meeting. patients are changing from research subjects to research partners. -dr. harlan krumholz, pcori board of governors and faculty member at yale school of medicine day 2 dr. joe selby, executive director of the patient-centered outcomes research institute, opened day 2 the pcori annual meeting by giving an overview of the type of research pcori funds: patient-centered comparative effectiveness research. cer, he said, compares two or more options about things that matter to patients. according to dr. selby, this research should be conducted in "real world" settings and should ideally pay attention to differences in effectiveness for different sub-groups of people (e.g. does a particular treatment work better for women than men). when pcori began awarding research contracts just a few years ago, most of the funding they offered fell into four broad categories: (1) assessing prevention, diagnosis, and treatment options; (2) addressing disparities; (3) improving health care systems; and (4) communication and dissemination research. now, pcori funding mechanisms are becoming increasingly targeted, addressing specific diseases or other topics that have been identified as high priority. these include programs that focus on asthma, ms, and reducing long-term opioid use, among others. pcori has also become increasingly interested in funding large studies that better represent the entire population. the morning's keynote presentation was given by dr. victor montori, an endocrinologist and health services researcher at the mayo clinic. dr. montori gave a compelling presentation on the importance of involving patients in decision making. what's best for a person, he said, depends on what that person values. dr. montori also lamented the curent research funding process, which leaves about 85% of scientific proposals unfunded. to do the type of large studies pcori aims to fund, he argued, research institutions need to end competition and encourage collaboration instead. during the following panel, which included a number of stakeholders from various health care organizations, nancy brown of the american heart association said that if patients really understood how the research process worked, they would be horrified. she also said that people don't want to waste their time thinking about their health--it's only when they become sick that health care becomes the center of everything. in the same panel, former u.s. congressman tony coelho spoke about the role patient advocacy organizations play in bringing the patient experience to our legislature. he also noted that we all need to advocate for pcori so that it doesn't disappear in 2018. after a series of several plenary presentations, i was eager to break out into smaller group sessions. the two breakout sessions i attended on day 2 highlighted examples of successful awardees from the communication and dissemination research (cdr) program and the eugene washington engagement awards. in the cdr panel, shared decision-making tools featured prominently as a means of improving communication between patients and their doctors. some awardees used focus groups to develop and refine their decision-making tools. research teams found it was crucial to solicit feedback from providers like doctors and nurses in addition to patients so that these tools could realistically be used in the clinic. in the second breakout session, engagement award recipients shared examples of "pre-research" activities they had conducted. some projects used engagement funds to conduct a needs assessment in their target population. other projects used their award to build a curriculum to train people to better understand and conduct patient-centered comparative effectiveness research. during the final breakout session of day 2, i presented as part of a panel discussion on the pipeline to proposals. the pipeline program provides funding to individuals or groups who would not ordinarily receive research funding from pcori, and trains us step-by-step, so that--theoretically--in three years we will have built the foundation for a successful, full-scale pcori award application. (read more about our project.) i enjoyed participating in this session because it gave me a much-needed opportunity to connect with follow pipeline awardees, but also because i believe this program is truly emblematic of the type of patient-driven research collaborations pcori was designed to support. a recent time magazine article (that i found in the airport on my way home from the pcori conference) addresses a patient-centered research question about breast cancer treatment. day 3 day 3 of the meeting featured a keynote presentation by nih director dr. francis collins. even though pcori is technically a nonprofit entity, not a federal agency like the national institutes of health, it was impactful to have the head of ahrq and the head of nih lend their time to this conference. i think it helps legitimize pcori as a credible, scientifically rigorous organization, even though the work they fund is quite a bit different. on day 3, i attended two very different breakout sessions: one on comparative effectiveness research methods and one on how to use your patient story to make a difference in research. over the past few years, pcori has developed comprehensive methodology standards that govern all aspects of the proposal, from how to involve patients in the research process to how to analyze the data collected during a study. the purpose of following these standards is to ensure research findings are valid and can be replicated. scientific methods are evaluated based on data quality, study design (e.g. randomized controlled trial or observational study), and how the data is interpreted. the pcori staff member who lead the session emphasized that, while there is no such thing as the perfect study--there will always be trade-offs--it's important to be cognizant of where weaknesses might be so that you can consider how those weaknesses might impact your results. the last session i participated in was by far the most hands-on. pcori's engagement staff spoke about storytelling as a "method" of sparking engagement and collaboration. they also shared a tool they created to walk patients through the process of teasing out bits of their patient story that might be relevant to a research question. while the tool was still in draft form, i loved the concept. i also loved to have something tangible i could take home with me after the conference given that so many of the other sessions were very philosophical and not immediately applicable to my daily work. finally took the time to do some sightseeing while visiting washington d.c. major themes and takeaways communicating research results back to the community is essential for building and maintaining trust (bonus points for involving patients and other stakeholders in developing a plan for sharing research results). pcori funding announcements are becoming increasingly more targeted and aimed at creating large, pragmatic clinical trials that more broadly reflect the "real world." rigorous research methods and meaningful patient engagement are equally important to pcori, even though they can sometimes feel at odds with one another. many applications they reject are dinged, though, because of their lack of the latter. there's no one-size-fits-all model for engagement, but here are some activities that have been successfully used by pcori awardees to create meaningful engagement: (1) including a patient partner as a co-investigator on the project and compensating them financially as such, (2) include patients, caregivers, and other stakeholders like physicians on project advisory committees, and (3) address research questions of interest to patients as identified by online surveys, focus groups, or other meetings. as i mentioned in my first recap post, overall it was a great event. i'm glad i was given the opportunity to attend. i also look forward to seeing further progress towards socializing and truly implementing patient-centered principles in research and clinical practice. to learn more or view archived videos from the 2015 pcori annual meeting, visit www.pcori.org. posted by katie wilkes at 7:26 pm 2 comments email thisblogthis!share to twittershare to facebookshare to pinterest labels: melanoma, patient advocacy, patients making a difference, pcori, research wednesday, october 14, 2015 a patient’s perspective on a patient-centered conference: highlights from #pcori2015 (part 1) elizabeth stoos and i at the pcori national meeting. elizabeth is the coordinator of the melanoma community registry at ohsu and a partner on my pcori project. last week, i was one of about 200 health care consumers (i.e. cancer survivor, caregiver of a person with a chronic condition) to participate in the patient centered outcomes research institute’s, or pcori’s, first national meeting in washington, d.c. although some of the work pcori does is fairly complex, the basic concept is simple: fund research that will help answer questions that are important to real people involve real people in the doing research to answer these questions to do this work, pcori relies heavily on input from a variety of people: patients and their caregivers, of course, but also physicians, nurses, and health insurers, among others. as someone who was treated for melanoma more than five years ago, i may not be a “patient” in the most traditional sense of the word, but because of my experience and my relationships with so many others who have been touched by the disease, i can help represent the collective voice of all my “mole mates” to the research world. one way i’ve done this has been by reviewing grant proposals; another way has been by partnering with dr. sancy leachman at oregon health & science university to obtain our own patient-centered research award from pcori. pcori invited me to attend this conference to share some of our lessons learned during a panel discussion. of course, this also gave me access to participate in other sessions and network with other pcori funding recipients. in the spirit of helping create a two-way conversation between researchers and the general public, i’ve attempted to summarize some of the highlights from the conference below. pcori has made some great progess since its inception in 2010, but i think we still have a long way to go to and lots to learn from one another before patients and their families become true partners in the health care decision-making and research process. i’m very thankful that i was given the opportunity to participate in this conference, and look forward to seeing the progress we all make in the coming years. day 1: change is hard: challenges and opportunities in turning new evidence into clinical practice “everything about pcori is having the right people involved.” –dr. eugene washington the first day of the conference was an optional, 5-hour session that was hosted by pcori in conjunction with ahrq (another health care research funder) and academyhealth. the session included large-group presentations by several of the major players who helped get pcori off the ground, including ahrq director dr. richard kronick, pcori executive director dr. joe selby, and former pcori board chair dr. eugene washington. day 1’s panel discussions were all about dissemination: how do you take a topic that’s already been studied and turn the results of that study into practice? for example, if a team of the nation’s top researchers did a study on skin cancer, and found that eating 10 gummy bears per day prevented skin cancer in adults under 30 years of age, we assume we’d all be stocking up on haribo. but in the complex world that is our health care system, implementing evidence into practice can take years, sometimes even decades. as the session’s title suggests, implementing research findings into real life practice is hard. dr. mark mcclellan, an experienced health care strategist and advisor, spoke about things that might help dissemination of research findings, such as reforming medicare payment models. he also acknowledged that often times we’re working up against culture change, which inevitably takes time. bottom line? although it can be slow-moving, working directly with patients can have a huge impact on effectiveness of dissemination. chip heath, author of made to stick, inspires conference attendees to be agents of change. panelists during tuesday’s session agreed that just because something is published in a prestigious medical journal, doesn’t mean it will lead to change in practice. systematic reviews and clinical practice guidelines can be helpful, particularly for busy clinicians who don’t have time to read 50+ journal articles per day, while others argued that physician assistants and nurses should be able to play a larger role in implementing findings into every day practice. the second panel brought up a few more suggestions: write materials at a reading level that people can actually understand (easier said than done), create materials that are tailored to the population they are targeting (also not as intuitive as you’d expect), encourage clinicians to become more comfortable admitting uncertainty to patients, as well as empowering patients to challenge the system and ask questions (e.g. do i really need this very expensive mri?) one of the panelists, tara montgomery from consumer reports, challenged us to think about diagnostic tests and medical treatments the way that we buy things like cars and new electronics. she also emphasized that humanizing data and turning it into a story can make it more compelling to the consumer. some of this responsibility, the panelists said, falls to journalists who can and should be reading the original journal articles. the afternoon concluded with a totally different type of presentation by bestselling author and stanford business school professor chip heath. after hours of interesting but relatively dry, academic panels, chip came up on stage and delivered a ted-style talk on how all of us in the room are agents for change. he explained that we all have a “rider” and an “elephant”—one of which is rational and the other more instinctual. change, he said, happens when we align the elephant and the rider. he explained this using a series of funny anecdotes and examples such as the old vs. new food pyramid and amazon.com vs. borders bookstore. his talk, which was viscerally different from any of the preceding talks that day, sent a message that perhaps the medical research community needs to “think outside the box” when it comes to disseminating and implementing evidence-based research. overall, it was an intellectually stimulating—albeit long—afternoon, but i left the session feeling a bit powerless and overwhelmed. how can i help bring about change if this group of highly educated, experienced professionals hasn’t quite figured it out yet? every time i participate in a pcori review meeting or training, i feel both welcomed by fellow participants, but also a bit intimidated given my lack of post-graduate credentials. despite being a conference about the importance of consumer engagement, this session still felt very "academic." i hope that in the future, pcori meetings will become increasing accessible to lay audiences, so that we can more widely start to do the paradigm-shifting work it was created to accomplish. change is tough indeed. stay tuned for more on day 2 and day 3! posted by katie wilkes at 9:14 pm 1 comments email thisblogthis!share to twittershare to facebookshare to pinterest labels: conference, patient advocacy, patients making a difference, pcori, research tuesday, june 23, 2015 sunscreen review: supergoop setting mist with rosemary, spf 50 if you're like me, you're religious about applying sunscreen in the morning but loath to reapply on top of your makeup. what to do? finally, the beauty product industry has developed a broad spectrum sunscreen that can be applied on top of your foundation and face powder. two new spf-infused setting mists became available this spring from sunscreen brands supergoop and coola. sephora stocks a mini bottle of the supergoop version, so i decided to give it a try before committing to a full-sized bottle of either. the basics: $12 for 1 oz. or $28 for 3.4 oz. at supergoop.com, sephora.com, etc. pros: i've taken the purse-sized bottle with me to work every day and given my skin a quick spray before heading outside for lunch or leaving my office for the day. it's lightweight and easy to apply. smells a bit like sunscreen, but also a bit like rosemary, so the sunscreen scent isn't unbearable. it doesn't make my face shiny or do anything weird to my makeup, so it's perfect for mid-day touchups. cons: as with any spray-on sunscreen, it's hard to know if you've applied enough or missed a spot. it can also make the hair around your face sticky if you're not careful, so spray with caution or cover your hairline before spraying. the verdict: i'm absolutely planning to purchase more of this when i run out. it's the perfect size to keep in my purse, and i've used it almost daily since i bought it. some reviewers on sephora.com have complained about stickiness or stinging, but i haven't had any real issues with it. will keep you posted as i continue using it! have you tried any of the new facial sunscreen mists yet? posted by katie wilkes at 9:01 pm 12 comments email thisblogthis!share to twittershare to facebookshare to pinterest labels: beauty, makeup, product reviews, summer, sun protection, sunscreen, sunscreen reviews monday, june 22, 2015 inspiration board: under the sea baby shower this summer, my brother and his wife are expecting their first baby. my studio apartment is much too small to entertain, so i love an opportunity to help plan a party at someone else's home. our "party planning committee" includes the mom-to-be's mother, her mother-in-law, her sister, her best friend, and me. we're having the shower at my mom's house, but i know she's super busy teaching summer school (and replacing her deck!), so i've been helping with invites and getting everyone set up and organized. because i coordinate events for a living, i've learned that it's crucial to get all helpers on the same page early on--whether you're planning an intimate baby shower or a large-scale fundraiser. i love getting everyone together for an in-person meeting, but if that's not feasible, a group email, facebook message, or text message can suffice. for my sister-in-law's shower, her friend suggested an "under the sea" theme, which i love for baby boy. we set up a group message, created a shared to-do list in google drive, and i began pinteresting like crazy! somewhat serendipitously, last week paperless post invited me to participate in a link-up about summertime entertaining. paperless post is a website that provides both virtual and printed invitations and other stationary. i've used them in the past for smaller get togethers (like my friend's bachelorette party), but hadn't thought to use them for this event. the designers at paperless post will choose a handful of blogger-inspired themes to turn into real invitations for their site. "under the sea" seems like a relatively common party theme, but my mom and i had a heck of a time finding an invitation that we both liked. i hope they consider turning my inspiration board into an invite on their site! here are a few of my favorites from the inspiration board: under the sea water party via catchmyparty.com. rubber ducky baby shower via catchmyparty.com. under the sea soiree via projectnursery.com. crab sandwiches via allthatglittersisgold.net. fishie crackers via thecottagemama.com. under the sea party decor via chickabug.com. posted by katie wilkes at 9:49 pm 8 comments email thisblogthis!share to twittershare to facebookshare to pinterest labels: baby shower, family, inspiration, parties, summer older posts home subscribe to: posts (atom) pages home my story press about me katie wilkes portland, or 20-something melanoma survivor learning how to love the skin i was born in. loves: spf, books, yoga, wine tasting, nail polish, and knitting. view my complete profile search this blog loading... contact follow by email blog archive ▼  2016 (3) ▼  november (2) a patient’s perspective on a patient-centered conf... a patient’s perspective on a patient-centered conf... ►  july (1) ►  2015 (7) ►  october (2) ►  june (2) ►  may (1) ►  march (1) ►  january (1) ►  2014 (17) ►  november (1) ►  october (1) ►  august (1) ►  july (1) ►  june (2) ►  may (1) ►  april (2) ►  march (2) ►  february (3) ►  january (3) ►  2013 (66) ►  december (4) ►  november (3) ►  october (2) ►  september (4) ►  august (4) ►  july (6) ►  june (7) ►  may (6) ►  april (5) ►  march (7) ►  february (8) ►  january (10) ►  2012 (83) ►  december (12) ►  november (23) ►  october (5) ►  september (5) ►  august (5) ►  july (5) ►  june (5) ►  may (6) ►  april (5) ►  march (7) ►  february (5) tags awareness beauty cancer survivor celebrities dating dha discoveries drugs early detection event facts fair skin fake n bake fashion fitzpatrick skin types fun fundraiser glenna kohl government regulation groupon guilt health holidays inspiration jersey shore just for fun life magazines melanoma men my story natural beauty news pale skin photos pop culture pretty in pale research risky behavior science self exam skin cancer skin cancer awareness skin cancer prevention summer sun sun protection sunburn sunless tanning sunscreen swimsuits tanning tanning beds tanning industry tanning salons tanorexic teenagers the media thoughts travel tv uv radiation young adult zinc oxide popular posts portland's first aim at melanoma walk, may 12 swimwear for your skin tone meeting the governor free skin cancer screenings at portland melanoma walk, may 12 mini break my favorites adventures with my enemy melanoma 10 months ago attitude of gratitude 1 year ago black is the new pink - fight melanoma 3 months ago jillian's journey with melanoma- a mother's story 3 days ago julie's journal: my life with melanoma! 4 years ago light skinned mother 2 years ago live in our skinz! 1 week ago melanoma and the city 2 months ago melanoma sucks! 2 years ago my journey fighting melanoma 2 years ago my life as a party — food, wine and decorations galore rose ~ from oz 8 months ago samvid beauty 10 months ago welcome to the hotel melanoma 1 week ago simple template. powered by blogger.


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