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Patient Understanding of the Risks and Benefits of Biologic Therapies in Inflammatory Bowel Disease: Insights from a Large-scale Analysis of Social Media Platforms

Martinez, Bibiana MPH*; Dailey, Francis MD*,†; Almario, Christopher V. MD, MSHPM*,†,‡,§; Keller, Michelle S. MPH*; Desai, Mansee BA*; Dupuy, Taylor BA*; Mosadeghi, Sasan MD, MS*; Whitman, Cynthia MPH*; Lasch, Karen MD; Ursos, Lyann PhD; Spiegel, Brennan M.R. MD, MSHS*,†,‡,§

doi: 10.1097/MIB.0000000000001110
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Background: Few studies have examined inflammatory bowel disease (IBD) patients' knowledge and understanding of biologic therapies outside traditional surveys. Here, we used social media data to examine IBD patients' understanding of the risks and benefits associated with biologic therapies and how this affects decision-making.

Methods: We collected posts from Twitter and e-forum discussions from >3000 social media sites posted between June 27, 2012 and June 27, 2015. Guided by natural language processing, we identified posts with specific IBD keywords that discussed the risks and/or benefits of biologics. We then manually coded the resulting posts and performed qualitative analysis using ATLAS.ti software. A hierarchical coding structure was developed based on the keyword list and relevant themes were identified through manual coding.

Results: We examined 1598 IBD-related posts, of which 452 (28.3%) centered on the risks and/or benefits of biologics. There were 5 main themes: negative experiences and concerns with biologics (n = 247; 54.6%), decision-making surrounding biologic use (n = 169; 37.4%), positive experiences with biologics (n = 168; 37.2%), information seeking from peers (n = 125; 27.7%), and cost (n = 38; 8.4%). Posts describing negative experiences primarily commented on side effects from biologics, concerns about potential side effects and increased cancer risk, and pregnancy safety concerns. Posts on decision-making focused on nonbiologic treatment options, hesitation to initiate biologics, and concerns about changing or discontinuing regimens.

Conclusions: Social media reveals a wide range of themes governing patients' experience and choice with IBD biologics. The complexity of navigating their risk–benefit profiles suggests merit in creating online tailored decision tools to support IBD patients' decision-making with biologic therapies.

Article first published online 13 April 2017.

*Cedars-Sinai Center for Outcomes Research and Education (CS-CORE), Los Angeles, California;

Department of Medicine, Cedars-Sinai Medical Center, Los Angeles, California;

Department of Medicine, Division of Digestive and Liver Diseases, Cedars-Sinai Medical Center, Los Angeles, California;

§Department of Medicine, Division of Health Services Research, Cedars-Sinai Medical Center, Los Angeles, California; and

Takeda Pharmaceuticals U.S.A., Inc., Deerfield, Illinois.

Reprints: Brennan M.R. Spiegel, MD, MSHS, Cedars-Sinai Health System Pacific Theatres Building, 116 North Robertson Boulevard, 4th Floor, Los Angeles, CA 90048 (e-mail: Brennan.Spiegel@cshs.org).

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal's Web site (www.ibdjournal.org).

Supported by Takeda Pharmaceuticals, U.S.A., Inc.

Presented at Digestive Disease Week; May 21–24, 2016; San Diego, CA.

K. Lasch and L. Ursos are employees of Takeda Pharmaceuticals U.S.A., Inc. The remaining authors have no conflicts of interest to disclose.

B. Martinez and F. Dailey share first co-authorship.

Received December 19, 2016

Accepted February 23, 2017

Crohn's disease (CD) and ulcerative colitis (UC), jointly referred to as inflammatory bowel disease (IBD), are chronic, disabling conditions often associated with significant morbidity and reductions in health-related quality of life.1,2 IBD is also associated with significant economic burden, with annual total costs ranging between $14.6 and $31.6 billion in the United States alone.3 To reduce this potential burden, it is imperative that IBD be diagnosed early and coupled with an effective treatment strategy. Although there are a number of available IBD treatment options, biologic medications remain the most efficacious and a mainstay of treatment for those with moderate-to-severe IBD.4,5 Biologics can alter the disease course of IBD leading to symptom remission, fewer hospitalizations, and improved health-related quality of life.4–7 Yet, despite their benefits, some biologics are also associated with significant side effects, including the potential increased risk of lymphoma, serious infections, and immunologic reactions, among others.

The complex risk–benefit profiles of different biologics, along with the increasing number of available therapies, have made it difficult for patients to make informed decisions when deciding between the various options. In addition to affecting the decision to initiate biologic therapy, patient understanding of the associated risks and benefits of biologics may also impact treatment adherence. Adding to the complexity of the decision-making process are some patients' misconceptions and lack of knowledge surrounding biologics. Siegel et al8 found that IBD patients tend to overestimate the benefits and underestimate the risks of infliximab. Another study found that nearly 80% of IBD patients did not have any knowledge of the safety profile of biologics.9 These studies provide valuable insights into patients' understanding of biologic therapies and also demonstrate a need to create awareness around these important points to improve informed decision-making in IBD treatment. However, we should note that the above studies were survey based with limited sample sizes and may not necessarily be representative of the entire IBD population.

To address this gap in knowledge, we used a novel qualitative research method known as social netnography, a type of ethnography that analyzes the free behavior of individuals on the Internet.10 Specifically, in this study, we used social media data to examine IBD patients' understanding of the risks and benefits associated with biologic therapies and how this affected decision-making in IBD treatment. In contrast to focus groups and studies of patient populations, social netnography provides a contextually based study of unfiltered, free-flowing conversations that may more reliably generalize to the population at large. Social netnography also allows for a wide sampling pattern and reveals information not often captured by health care providers or traditional qualitative research.

Although qualitative in nature, the results from social netnography offer broad insights into patient's knowledge, attitudes, and beliefs about their disease and treatment. When performed in IBD, the results of social netnography generate insights about how IBD patients and their caregivers navigate the risks and benefits of biologics, inform a conceptual framework around patient therapeutic decision-making, and enumerate patient-reported themes that can be incorporated into future decision tools to assist with shared decision-making around biologic prescribing (See Video, Supplemental Digital Content, http://links.lww.com/IBD/B549).

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MATERIALS AND METHODS

Data Collection

We collaborated with researchers from Treato (www.treato.com), a social media data mining service, to extract relevant social media and e-forum data. Treato automatically collects, indexes, and analyzes patient and caregiver content from over 3000 United States-based and international-based health-related websites, such as HealingWell.com, Facebook.com, Twitter.com, among many others. Posts are indexed using a lexicon of over 100,000 medical terms (based on the Unified Medical Language System) and a built-for-purpose “patient language” dictionary manually created by Treato researchers.11 They then use proprietary natural language processing classification algorithms to index posts with this lexicon; this results in an easily searched data set that can be analyzed in aggregate.11

Treato extracted relevant posts from their e-forum database using a set of keywords developed through a comprehensive landscape literature review and validated by domain experts on the research team. All posts were written in English and published online between June 27, 2012 and June 27, 2015. The keyword search list included 2 categories: conditions and medications. The conditions category included names, abbreviations, and common misspellings for IBD, UC, and CD. The medications category included brand and generic names for nonbiologics and biologics used to treat IBD. Table 1 contains a complete list of the keywords used. Posts were selected for analysis if they contained a keyword from the conditions category and a keyword from the medications category (Boolean search: condition AND medication). Of note, although this current study is focused on biologics, the original Treato extraction included posts referencing either biologics or nonbiologics, as future research will examine risk–benefit discussions surrounding nonbiologic therapies.

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Qualitative Analysis

Once we identified all relevant text, we created transcripts of the social media posts and manually coded them using ATLAS.ti 7.0 (ATLAS.ti Scientific Software Development GmbH, Berlin, Germany). Two coders (B.M. and C.V.A.) performed the analysis guided by a codebook that was developed a priori using our original keyword search list. This codebook was modified and updated iteratively as our analysis revealed new themes and issues that had not been included in the original codebook. Posts were assigned a code if they mentioned a biologic medication and made reference to its benefits and/or risks within the context of IBD treatment decisions.

We used a grounded theory approach when analyzing the data,12 as we subjected the e-forum posts to 3 levels of analysis: open coding, axial coding, and thematic identification. The first level of analysis, open coding, identified individual concepts present in the transcripts. We developed a hierarchical coding structure based on our codebook, which allowed us to categorize and quantify all quotes within several domains. We considered saturation of the codebook to be achieved when additional posts failed to yield new codes. Axial coding, the second level of analysis, required linking the first-level codes to identify instances of more general or abstract phenomena or processes. Through axial coding, we identified commonalities between topics, which yielded domains and subdomain structures. Finally, using thematic analysis, we integrated the concepts identified during the axial coding phase into themes and narrative structures describing subjects' discussions about the risks and benefits of IBD treatment with biologic therapies.

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ETHICAL CONSIDERATIONS

This study was reviewed by the Cedars-Sinai Medical Center Institutional Review Board (Pro00039058) and it was deemed exempt from review, as it did not meet the definition of “human subject research” under Department of Health and Human Services or Food and Drug Administration regulations.

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RESULTS

We imported a random sample of 15,701 online posts from Treato that met inclusion criteria (i.e., mentioned an IBD condition and IBD medication) into ATLAS.ti. We then used ATLAS.ti's automatic coding feature to identify 8453 (53.8%) posts that specifically mentioned biologic medications. Of these posts, we then manually examined a sample of 1598 (18.9%) posts, at which point thematic saturation of the data set was achieved. Among these posts, 452 (28.3%) discussed the risks and benefits of biologics in IBD treatment. In Table 2, we present the source websites for the 452 posts, and the majority were from Facebook, HealingWell.com, Crohn's Forum, iHaveUC, and Twitter.

Five main themes emerged from our analyses of the 452 posts that discussed risks–benefits of biologics (Fig. 1): (1) negative experiences and concerns about biologics, (2) decision-making surrounding biologic use, (3) positive experiences with biologics, (4) information- and support-seeking from the online community, and (5) discussions regarding cost. Figure 2 displays the thematic network showing subdomains within each main theme. The most commonly mentioned biologics were infliximab (n = 260), adalimumab (n = 227), certolizumab (n = 23), and vedolizumab (n = 8). The following sections describe the 5 main themes in more detail and include select, representative quotes.

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Negative Experiences and Concerns with Biologics

We found that online posts most commonly discussed the negative aspects of biologics (n = 247, 54.6%). The most frequently discussed topic revolved around side effects experienced as a result of taking biologics (n = 100). Here, individuals discussed specific side effects, such as fatigue, rash/skin issues, infections, hair loss, and headaches (Fig. 2). Aside from experienced side effects, individuals also expressed concerns about potential side effects (n = 60), increased cancer risk (n = 19), pregnancy safety (n = 19), and a weakened immune system (n = 16).

Below are representative examples of social media posts from individuals who experienced side effects after using biologic therapies:

I have been on [Biologic X] for over a year and while it seems to be helping my Crohn's disease, I can't stand the reactions anymore. The first few infusions ended me in the hospital with flu like symptoms, and then I got sick during another one and they gave me some drugs to counteract the effect. Now for about 7 months I have been breaking out with horrible burning rashes on my hands and feet and nothing takes away the pain.

[Biologic X] gave me a lot of immune system issues. Small cuts would get infected and spread, requiring antibiotics, and I had major swelling in my glands/lymph nodes. Scared the beejeebus outta me.

[Biologic X] made about 65% of my hair fall out before my doctor stopped the treatment.

The possibility of developing cancer was also an important issue discussed by individuals either taking or considering starting biologic medications:

I am quite nervous about starting this medication. Although I know that the Crohn's needs to be treated, the potential side effects of [Biologic X] that I have read about scare the heck out of me. I have read that people of my age/sex are more prone to the cancer side effects. I'm worried about working on one problem and starting a whole new one.

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Decision-making Surrounding Biologic Use

One hundred sixty-nine online posts (37.3%) captured the decision-making processes surrounding use of biologics. Specifically, these posts commented on nonbiologic treatment options (n = 93) and hesitation to initiate (n = 28), change (n = 26), and discontinue biologics (n = 22).

We found that individuals discussed various medication attributes as they sought to reach a balance between perceived potential benefits and risks. In this case, an individual describes a perceived high risk of developing cancer with the potential for seeking relief from serious IBD symptoms:

Feeling like death again. Has anyone been on [Biologic X] for Crohn's or UC? I'm a little terrified to start a biologic (hey, what's up very increased risk of cancer?), but I seriously cannot be sick like this anymore.

Our analyses also revealed that individuals considered the negative side effects they experienced after taking biologic therapies when making decisions about whether to continue or discontinue these medications. In these examples, the individuals developed intolerable side effects and subsequently decided to discontinue the drug:

I have a moderate to severe case and was pretty quickly put on [Biologic X]. It worked pretty well for me, but after the first couple of years I started noticing more of the side effects of the drug. I would have dizzy spells, cold spells, and constant infections all over my body. Because of these side effects, and because I know these drugs only work for so long on most patients, I decided to take another route.

I was on [Biologic X] for almost 4 years and began having adverse reactions-psoriasis, rashes, dry eyes and lupus-like symptoms. When I stopped [Biologic X], these issues began going away. I tried [Biologic Y] and symptoms began again. I stopped everything but Imuran and have been doing better. The side effects to me were much much worse than the Crohn's. No doctor would say that the [Biologic X] caused the problems but clearly, I am better now without taking it.

By contrast, the individuals below found the side effects to be more tolerable than the symptoms from IBD, and decided to continue taking the biologics.

[Biologic X] works for me, thank god. Yes there are some side effects, but in comparison to being deadly ill - it is worth it.

I am currently on [Biologic X], in fact I'm going to get a treatment today. I always feel sick for a few days after… flu-like symptoms and very fatigued. I usually feel this way for about 3 days after. But it's worth it for the relief of my Crohn's symptoms.

Individuals, particularly those who expressed frustration with the effectiveness of the biologics at managing IBD, also discussed the use of nonbiologic treatment options and natural remedies and diets:

I refuse to take chemicals. I've taken everything including [Biologic X], which caused an allergic reaction on the 3rd treatment. Eating the proper foods, vitamins, plenty of rest/relaxation, stay as stress free as possible, ridding the body of toxins & impurities are the natural healers for Crohn's.

Amazing what adding bioavailable juices of 17 fruits and vegetables daily has done for my health. No joint pain, no fatigue, no gingivitis, more energy, no Crohn's and no more [Biologic X], 6-MP, steroids, etc. Best I've felt in ten years!

I'm thinking of taking classes on herbalism and natural healing! I'm on too many bio meds that don't even help me. So I'm going natural once my cycle of [Biologic X] is done. It hasn't helped me one bit and the thought of all those chemicals going in me for nothing is frightening!

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Positive Experiences with Biologics

We found 168 posts (37.2%) where individuals expressed positive experiences with their biologic therapies based on symptom improvement (n = 158) and even remission (n = 32). Example posts include:

I was so bad with Crohn's. All meds stopped working, I was hours away from death and they gave me the [Biologic X]. After the first 3 minutes the doctor said ‘You are going to be fine.’ Thank god, it’s a great treatment.

[Biologic X] + Methotrexate worked great for my daughter - 9 months after diagnosis, she had almost clean scopes!! The [Biologic X] infusions are very easy - my daughter even quite enjoys them because she gets a chance to relax, read and watch TV (and miss school).

I have been doing very well on the [Biologic X] and have happily been pretty much symptom free for about a year.

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Information- and Support-Seeking from Online Community

We uncovered 125 posts (27.7%) that highlighted the importance of the online community in supporting individuals as they navigated the available biologic treatment options. Most of these individuals went online seeking specific information about biologics (n = 86). Some looked for support and reassurance about their IBD illness experience and information on other IBD-related issues (n = 37). For example, the 2 individuals below acknowledged the support of online IBD health forum communities and provided words of encouragement, respectively:

I was really sick for the last two years and it's really sucked. Some days I thought I might be dying. No one knew what was wrong with me. I was finally diagnosed in May and I found the spoonie community on Tumblr, which has been one of the biggest supports since then…I just started [Biologic X] though and I'm feeling a lot more like my old self.

It's a cruel, cruel disease. And as you in particular know, the drugs to treat it can be equally as cruel. I really hope you get a break soon. You and your wife deserve it…I was diagnosed 4 years ago, at age 25. After a year on steroids, I was put on azathioprine (they didn't agree with me) and [Biologic X] (stopped because I was given too much and had anaphylaxis). BUT I am now on 6mp (mercaptopurine) and [Biologic Y] injections…They're working for my Crohn's symptoms.

Moreover, we also found that even after individuals received medical advice from their health care providers, many still turned to social media with questions and to validate their experiences. Representative posts include:

On [Biologic X] and Imuran. Crohn's symptoms are cut in half, but side effects from meds are ridiculous! Is it like this with all immunosuppressants and biologics combined, or should I try another combination? GI tells me to wait and give meds more time. Not sure of which is worse, the Crohn's or the drugs. Anyone else?

[Biologic X] question: I have been lurking here since diagnosis in 2006, the help has been awesome. I had a resection, small bowel, this past December, pancreatitis from 6mp and now I am on [Biologic X]. I feel my Crohn's is still active, since they did not remove all disease with surgery. My GI wants to do pill cam again. Have had one infection after another (UTI) and have been on antibiotics off and on for eight months, due to [Biologic X], I think. Now, finally my question… would it be unreasonable to stop [Biologic X]?

My daughter was diagnosed with Crohn's in November. We have tried all kinds of meds. They want us to think about [Biologic X]. We are so scared to start it after reading all the terrible things that could happen after taking it. Is it worth the risk?

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Cost of Biologics

Finally, a small number of online discussions (n = 38, 8.4%) commented on the costs of biologic therapies. The posts expressed users' concerns about their inability to pay for biologics due to their high cost, and their fears and anxieties about losing the benefits obtained from these therapies:

I am desperately trying to raise 1500.00 for a [Biologic X] treatment. As most know I have Crohn's disease. Thanks to [Biologic X] I am now in remission. I need this treatment to stay healthy. If you can help all donations can be made through PayPal using my email. Thank you for your help and support.

I've been fine since I started [Biologic X] 8 years ago, however I just turned 21 and lost CCS (California Children's services) and Medi-Cal. So I haven't had a [Biologic X] infusion in 23 weeks and I can feel the abscess that follows the fistula coming back. I seriously don't know what to do, I have no medical insurance and no [Biologic X] and I'm about to graduate college. Does anybody know of anything I can do? I'm kinda panicking.

Our analysis also illustrated that even individuals with health insurance still described issues either obtaining coverage for their medication or covering copayments.

My health insurance would no longer pay for the [Biologic X] shots. It's expensive at $4300.00 per month for insurance, but works in reducing flare ups or putting Crohn's in remission.

It has been suggested I may have to go on [Biologic X] for my UC. But I would only be entitled to 3 sessions due to costs? Is this right?

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DISCUSSION

Social netnography analysis reveals a wide range of themes governing patients' experience and choice with IBD biologics. Five main themes emerged, which included negative experiences and concerns about biologics, decision-making surrounding biologic use, positive experiences with biologics, information- and support-seeking from the online community, and cost concerns.

This study demonstrates how social media can serve as a promising data source that offers unique opportunities for studying specific patient populations,11,13–16 such as those from the IBD community. With a growing number of social media users worldwide,17 social netnography will become an increasingly important methodological tool, especially as it has a number of advantages over traditional qualitative methods, such as focus groups and in-depth interviews. For example, by collecting and analyzing passively collected social media data, it allows for content classification similar to that obtained during traditional methods, but without introducing observation bias (i.e., Hawthorne effect).11 This leads to analyses of unfiltered conversations free from the constraints of focused questions and the inherent biases from focus group leaders and interviewers. Social netnography also allows for collection of large amounts of data on a scale that far surpasses sample sizes from traditional methods, such as focus groups or individual cognitive interviews. In short, social netnography is akin to a large-scale virtual focus group not bound by physical locale and not subject to the Hawthorne effect.

Findings from our study continue to demonstrate the marked complexity that patients face as they consider the risks and benefits of initiating, changing, or discontinuing biologics. Navigating such risk–benefit profiles will become even more complex as additional biologics, some of which have novel mechanisms of action, become available for clinical use in the near future. Although our study provides insights into patients' understanding of the risks and benefits associated with biologic therapies, further research to better understand how patients navigate biologics' risk–benefit profiles in the decision-making process are needed. Methods such as adaptive choice-based conjoint analyses18 can quantitatively assess what biologic attributes (e.g., mode of administration, effectiveness, associated lymphoma risk) matter most to patients when choosing among the various therapies. This is the subject of our future research, and we aim to understand what the IBD population-at-large values most when deciding among competing biologic options. Yet, we should note that the decision-making process is highly individualized; one person's preferences may not necessarily match closely to the preferences for the “average” IBD patient. This is where online tailored decision tools that capture a patient's knowledge, attitudes, and beliefs could support both the patient and the provider in the shared decision-making process.

We also found that more than 25% of posts involved biologic information- and support-seeking from peers. Even those who already saw a physician still turned to their social media peers with questions and to seek validation. Yet, the quality and accuracy of such information obtained through social media forums is unknown. Previous studies found that quality of IBD websites varies widely; some are too difficult to comprehend or contain out of date information.19–23 It is likely that IBD information found on social media also suffers from similar issues. Because of the increasing number of IBD patients searching on-line for health information,24 informed stakeholders (e.g., health care providers, patient advocacy societies, professional societies) should have a presence in social media to improve the quality and accuracy of online IBD- and biologics-related information.

Our study is limited because there is risk of selection bias. The sample only included those who post on social media and health-focused websites, and our findings may not be generalizable to all IBD patients. Some IBD patients, particularly individuals with privacy concerns or who do not have Internet access, may not regularly post on social media. Additionally, we were unable to capture all online discussions surrounding biologics and IBD. For example, posts that discussed biologics without directly mentioning a specific medication as well as those written in languages other than English were not included in this study, leading to potential selection bias. Yet, it is unclear whether those who do not engage in social media or non-English speakers have different IBD and biologic experiences. Moreover, Internet use is nearing saturation, and more than two-thirds of all Americans currently use social media, including over one-third of seniors.17 There also may have been patient misclassification, as we did not confirm IBD diagnoses or have access to linked ICD-10 codes. However, several publications evaluating the reliability of self-reported diagnoses of chronic diseases and treatments have found high validity of such self-reports.25–30 Furthermore, IBD, CD, and UC are specific diagnoses made by health care providers, which is in contrast to disorders such as irritable bowel syndrome and Celiac disease where individuals may self-diagnosis themselves. Our study also specifically focused on biologic therapies in IBD, which should have eliminated subjects with self-reported GI illnesses for which biologic therapies would not be prescribed.

In summary, our analysis of passively collected social media data revealed a wide range of themes describing experiences with biologic therapies in the free-range lives of those with IBD. With the increasing number of biologic therapies available to those with IBD, it is becoming more complex for patients to weigh the risks and benefits when deciding to initiate, change, continue, or discontinue biologics. Further research to better understand how IBD patients navigate biologics' risk–benefit profiles is warranted. Efforts are also needed to improve communication between patients and providers when discussing biologics' risks and benefits and to create online decision tools that support them in the treatment decision-making process.

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ACKNOWLEDGMENTS

The authors would like to thank and acknowledge Julia Shklovskaya, MPPA, (Takeda Pharmaceuticals, U.S.A., Inc.) for her project management and support.

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Keywords:

inflammatory bowel disease; biologic medications; social netnography

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