Rare disease-specific social media sites: An opportunity for collaboration

2013 ◽  
Vol 6 (1) ◽  
pp. 71-76 ◽  
Author(s):  
Kimberly K Walker
Keyword(s):  
Social Media ◽  
Rare Disease ◽  
Disease Specific

scholarly journals A novel approach to conducting clinical trials in the community setting: Utilizing patient-driven platforms and social media to drive web-based patient recruitment

2019 ◽  
Author(s):  
Janelle Applequist ◽  
Cristina Burroughs ◽  
Artemio Ramirez ◽  
Peter A. Merkel ◽  
Marc E. Rothenberg ◽  
...  
Keyword(s):  
Social Media ◽  
Clinical Research ◽  
Rare Disease ◽  
Patient Recruitment ◽  
Research Approach ◽  
Marketing Theory ◽  
Disease Category ◽  
Web Based ◽  
Recruitment Methods ◽  
Research Studies

Abstract Background: Participant recruitment for clinical research studies remains a significant challenge for researchers. Novel approaches to recruitment are necessary to ensure that populations are easier to reach. In the context of rare diseases, social media provides a unique opportunity for connecting with patient groups that have representatively lower diagnosis rates when compared with more common maladies. We describe the implementation of designing a patient-centered approach to message design for the purposes of recruiting patients for clinical research studies for rare disease populations. Methods: Using an iterative research approach, we analyzed our previous experience of using web-based direct-to-patient recruitment methods to compare these online strategies with traditional center of excellence recruitment strategies. After choosing six research studies for inclusion in the previous study, in-depth, online interviews ( n = 37) were conducted with patients represented in each disease category to develop and test recruitment message strategies for social media and a Web-based platform for patients to access study information and pre-screen. Finally, relationships were established with Patient Advocacy Groups representing each rare disease category to ensure further dissemination of recruitment materials via their own social media networks. Results: Guided by social marketing theory, we created and tested various recruitment message designs. Three key message concepts preferred by patients emerged: (1) infographic; (2) positive emotional messages; and (3) educational information for sharing. A base study website that was created and edited based on qualitative user-testing. This website includes the option for potential participants to pre-screen and determine their eligibility for the study. Conclusions: Study participants report wanting to be involved in the design and implementation of recruitment approaches for clinical research studies. The application of the aforementioned methods could aide in the evolution of clinical research practices for the recruitment of both rare and common diseases, where patient-centric approaches can help to create targeted messages designs that participants pre-test and support.

scholarly journals Social Media and Clinical Trials in Pediatric Disease: Musings From the Bench

2021 ◽  
Vol 12 ◽  
Author(s):  
Leslie Nelson ◽  
Susan T. Iannaccone
Keyword(s):  
Social Media ◽  
Clinical Trials ◽  
Rare Disease ◽  
Pros And Cons ◽  
Use Of Social Media

The use of social media in clinical trials, for recruiting and retention as well as for collecting data, has become increasingly common. However, little has been documented in respect to the guidelines for its use and the possible effects it may have on clinical trials. In this review, we provide an overview of the guidance that has been published and muse the pros and cons of the use of social media in trials for rare disease.

scholarly journals SARS-CoV-2 disrupts clinical research: the role of a rare disease-specific trial network

2020 ◽  
Vol 56 (3) ◽  
pp. 2002114
Author(s):  
Silke van Koningsbruggen-Rietschel ◽  
Fiona Dunlevy ◽  
Veerle Bulteel ◽  
Damian G. Downey ◽  
Lieven Dupont
Keyword(s):  
Clinical Research ◽  
Rare Disease ◽  
Trial Network ◽  
Disease Specific

scholarly journals Using Social Media to Uncover Treatment Experiences and Decisions in Patients With Acute Myeloid Leukemia or Myelodysplastic Syndrome Who Are Ineligible for Intensive Chemotherapy: Patient-Centric Qualitative Data Analysis (Preprint)

2019 ◽  
Author(s):  
Alison Booth ◽  
Timothy Bell ◽  
Sonia Halhol ◽  
Shiyu Pan ◽  
Verna Welch ◽  
...  
Keyword(s):  
Social Media ◽  
Acute Myeloid Leukemia ◽  
Myeloid Leukemia ◽  
Qualitative Data ◽  
Treatment Options ◽  
Relevant Information ◽  
Treatment Decisions ◽  
Intensive Chemotherapy ◽  
Disease Specific ◽  
Acute Myeloid

BACKGROUND Until recently, treatment options were limited for patients with acute myeloid leukemia and myelodysplastic syndrome (AML and MDS) who are ineligible for intensive chemotherapy. Owing to the condition’s rapid progression, it is difficult to identify what is most important to patients when making treatment decisions. Patients’ needs can be better addressed by gaining a deeper understanding of their perspectives, which is valuable in the decision-making process. The Food and Drug Administration recently encouraged the use of social media as a tool to gain insight on patients’ perspectives regarding symptoms experienced and the impacts of their disease. OBJECTIVE This study aimed to use disease-specific social media posts by patients with AML or MDS who are ineligible for intensive chemotherapy and their caregivers to capture factors they feel are most important, and to provide current evidence to inform and characterize these perspectives. METHODS Posts by patients with AML or MDS and their caregivers were extracted from publicly available discussions on 3 large AML- or MDS–specific sites. These posts were manually reviewed to only include patients who are ineligible for intensive chemotherapy. A total of 1443 posts from 220 AML patients/caregivers and 2733 posts from 127 MDS patients/caregivers met the study inclusion criteria. A qualitative data analysis (QDA) of a sample of 85 patients’/caregivers’ posts was conducted to identify themes, and a targeted QDA of posts from 79 users focused on treatment decision discussions. Posts were manually reviewed, and relevant text segments were coded and grouped into categories and overall themes. RESULTS Eighty-six percent (73/85) of users in the overall QDA had relevant information about the key objectives. The most commonly discussed treatment experience theme was the humanistic burden of AML or MDS in terms of emotional/physical impact and impact on family (86%, 63/73 of users), followed by treatment decisions (56%, 41/73) and unmet needs (50%, 37/73). In the QDA of treatment decisions, 60 posts from 45 users contained relevant information. Patients commonly reported the desire to reach specific milestones, including birthdays and weddings. They wished for a better quality of life over quantity of life, did not want the risk of suffering from side effects, and expressed a clear preference to be at home rather than in a hospital or care home. CONCLUSIONS This study was a novel application of disease-specific social media. It highlighted experiences in the current treatment of AML and MDS, including information gaps, patient/caregiver uncertainty, and the importance of understanding patients’/caregivers’ goals and opinions. A clear finding from this research was the importance of reaching certain personal life goals and being at home with family and friends. The analysis showed that patients/caregivers face additional challenges, including humanistic impacts and a lack of information regarding treatment options.

A Big World Made Small: Using Social Media to Optimize Patient Care

2019 ◽  
pp. e212-e218 ◽  
Author(s):  
Ishwaria M. Subbiah ◽  
Erika Hamilton ◽  
Miriam Knoll ◽  
Kelly Shanahan ◽  
Jane Meisel
Keyword(s):  
Clinical Trial ◽  
Social Media ◽  
Stakeholder Engagement ◽  
Information Dissemination ◽  
Community Building ◽  
Trial Participation ◽  
Clinical Trial Participation ◽  
Current State ◽  
The Impact ◽  
Disease Specific

Emerging modalities of communication have transformed the landscape of information dissemination particularly in the context of health care. Within oncology, stakeholders in all roles have formed both role-specific and multidisciplinary communities within the modalities of social media. Two platforms with particularly high adoption and penetration within oncologic practice for clinicians and general oncologic care as well as for patients and the community have been Facebook and Twitter. On both platforms, patients have come together to form disease-specific (or even mutation-specific) groups ripe with discussion on all aspects of their cancer, including disease and treatment symptoms, novel therapeutics, and clinical trial participation. Similarly, clinicians have united within professional communities to facilitate collaboration and community building in this rapidly changing medical practice landscape. Here, we investigate the current state of stakeholder engagement within social media and review strategies and platforms to maximize the impact of social media for patients and clinicians.

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