{"id":23525,"date":"2024-04-04T06:06:29","date_gmt":"2024-04-04T06:06:29","guid":{"rendered":"http:\/\/staging.avdheshsharma.com\/how-patient-engagement-can-enrich-medical-studies-and-literature-interview-with-clarinda-cerejo\/"},"modified":"2024-07-31T04:40:38","modified_gmt":"2024-07-31T04:40:38","slug":"how-patient-engagement-can-enrich-medical-studies-and-literature-interview-with-clarinda-cerejo","status":"publish","type":"post","link":"https:\/\/www.editage.com\/insights\/how-patient-engagement-can-enrich-medical-studies-and-literature-interview-with-clarinda-cerejo","title":{"rendered":"How patient engagement can enrich medical studies and literature: Interview with Clarinda Cerejo"},"content":{"rendered":"

The right to health is a recognized fundamental human right. When you think of good-quality healthcare, you might perhaps visualize a patient around whose needs the healthcare infrastructure is designed. Indeed, there\u2019s growing sensitivity to keeping patients\u2019 unique contexts and experiences in mind when developing treatment plans.<\/span><\/span><\/span><\/span><\/p>\n

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Yet, in some ways, this is envisioned as a top-down approach, where a healthcare expert typically determines what the patient needs. Patient involvement does not often extend to a crucial component underpinning healthcare: the planning of medical studies and the reporting of research outcomes\u2014which are the sources of evidence informing healthcare practices.<\/span><\/span><\/span><\/span><\/p>\n

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Just ahead of this year\u2019s World Health Day<\/strong> (April 7), I speak with Clarinda Cerejo<\/b>, a passionate patient expert, about how engaging patients at these stages can improve the quality of healthcare provided.<\/span><\/span><\/span><\/span><\/p>\n

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About Clarinda:<\/span><\/span><\/span><\/b> Clarinda is a rare disease patient, a EUPATI-certified Patient Expert, an India Ambassador for The Sumaira Foundation, a Cochrane Consumer Reviewer, and a Stanford-certified Design Thinker.<\/span><\/span><\/span><\/span><\/span><\/span><\/p>\n

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She serves on the Board of Directors for the Global Patient Advocacy Coalition (GPAC) and on the Management Committee of the Rare Disease Research Network (partnership project between CamRARE and the Patient-Led Research Hub).\u00a0<\/span><\/span><\/span><\/span><\/span><\/span>She consults various organizations, including the World Health Organization, on patient\/stakeholder outreach and engagement.<\/span><\/span><\/span><\/span><\/span><\/span><\/p>\n

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As co-host of the podcast <\/span><\/span><\/span>Not Just Patients<\/span><\/span><\/i><\/a>, Clarinda\u2019s goal is to amplify the patient voice and break barriers to meaningful patient involvement in healthcare.<\/span><\/span><\/span><\/span><\/span><\/span><\/p>\n

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She is also a former colleague who served as Editor-in-Chief, Editage Insights\u2014during which time, she amassed excellent insights into scholarly publishing from a researcher perspective.<\/span><\/span><\/span><\/span><\/span><\/span><\/p>\n

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Scholarly communication has traditionally been a transfer of advanced knowledge from subject-matter experts to other subject-matter experts. How can first-hand patient experiences and perspectives add value to medical literature?<\/span><\/span><\/b><\/span><\/span><\/span><\/p>\n

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Let\u2019s challenge the definition of \u201csubject-matter expert\u201d here. Wouldn\u2019t you agree that someone who lives with the subject matter 24\/7 is an expert? For clinical studies, that would be the patient! When you think about it like this, it seems obvious that patients should be more involved in the development of medicines and the associated medical literature.<\/span><\/span><\/span><\/span><\/p>\n

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Unfortunately, for centuries, and even today to a large extent, the patient has been seen as a mere beneficiary who must take what they get from the experts and not ask questions. But patients are<\/i> asking more questions, reading more medical research papers, and beginning to see their lived experience as a valid and crucial form of expertise.<\/span><\/span><\/span><\/span><\/p>\n

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And the industry is increasingly seeing first-hand the value that patients can bring to medical research and publication, from making sure that research outcomes are more relevant to the end consumer and decision-maker, that is, the patient, to making sure that the research publication is drafted keeping not just other scientists but also patients in mind.<\/span><\/span><\/span><\/span><\/p>\n

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An additional key benefit of patient involvement in medical publications is that it increases the credibility of the publication for the patient community. This means that if medical publications were to include patients as authors, more as the norm than the exception, this could help with public trust in science at large.<\/span><\/span><\/span><\/span><\/p>\n

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Interested in learning how to edit a medical manuscript? Register for our upcoming event: Live edit of a medical manuscript<\/a>.\u00a0<\/em><\/strong><\/p>\n

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Those are great points to think over. How common are patient peer reviews at medical journals? Do patients need special guidance or training to serve as reviewers?<\/span><\/span><\/b><\/span><\/span><\/span><\/p>\n

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Patient peer review is not as common as it should be, but the trend is moving in the right direction. <\/span>Cochrane<\/span><\/a>, which publishes systematic reviews on topics that aid medical decision-making, is one of the organizations leading the charge, making \u201chealthcare consumer\u201d (another word for patient<\/i>) reviews mandatory for all systematic reviews and their published protocols. <\/span><\/span><\/span><\/span><\/p>\n

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Some journals, like the <\/span>British Medical Journal<\/span><\/i><\/a> (BMJ) and the <\/span>Journal of Patient Experience<\/span><\/i><\/a> include patient peer reviews as part of their standard editorial process; others might seek out patient peer reviewers only when the editor feels that a particular submission could especially benefit from a patient\u2019s eye.<\/span><\/span><\/span><\/span><\/p>\n

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Patients as journal editors are less common, but some journals are innovating strategies to change this. For example, the journal <\/span>Research Involvement and Engagement<\/span><\/i><\/a> has a patient as co-Editor-in-Chief.<\/span><\/span><\/span><\/span><\/p>\n

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Typically, the only eligibility criteria for patients are (a) that they are comfortable reading and writing in English, (b) live with or are a caregiver for the condition being addressed in the paper, and (c) have no conflicts of interest in performing the review.<\/span><\/span><\/span><\/span><\/p>\n

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Just as for academics doing their first peer review, there is no formal training as such, but most journals that invite patients as peer reviewers provide guidelines for how to approach reviewing each manuscript section. Additionally, patient peer reviewers might find this \u201c<\/span>step-by-step guide<\/span><\/a>\u201d published in BMJ Health & Care Informatics<\/i> useful.<\/span><\/span><\/span><\/span><\/p>\n

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The main challenge for patients starting as peer reviewers is that they may feel underconfident and second-guess their recommendations, or worry that they are asking \u201cstupid questions.\u201d The important thing for them to remember is that all peer reviewers (even scientists) feel this way about performing peer reviews initially, and that they will gain confidence as they perform more reviews.<\/span><\/span><\/span><\/span><\/p>\n

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How can medical\/clinical researchers design their studies and plan their publications such that patient perspectives are integrated in the outcomes?<\/span><\/span><\/b><\/span><\/span><\/span><\/p>\n

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Researchers can set up patient advisory boards or plan to conduct patient interviews to review and refine their study design. These are valid forms of patient involvement and would tick the box. <\/span><\/span><\/span><\/span><\/p>\n

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But I think the best way to involve patients for maximal impact is to include them as study authors. This means involving them from the outset of study design all the way through to publication. This approach can offer perspectives that clinical researchers would never have fathomed but that can significantly improve patient retention and adherence within the study.<\/span><\/span><\/span><\/span><\/p>\n

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Here\u2019s a great story I heard from a patient author who was involved in a multiple sclerosis (MS) study: The study required patients to go through a physical booklet, and the researchers were very proud of the beautifully designed paperback they had produced. When the patient author saw it, he pointed out that the paperback didn\u2019t stay open unless held with two hands, and that MS patients with disabilities might struggle to hold a book in one hand and turn pages with the other. Instead, they needed a spiral bound booklet that could sit open on the table and have pages turned with one hand. <\/span><\/span><\/span><\/span><\/p>\n

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I thought this was a fascinating example of the real value patient authors can bring to research design and implementation.<\/span><\/span><\/span><\/span><\/p>\n

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How can researchers, healthcare professionals, and scholarly publishers make relevant medical information more accessible to patients and their caregivers?<\/span><\/span><\/b><\/span><\/span><\/span><\/p>\n

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I\u2019m involved in creating plain-language summaries (PLS) for <\/span>The Sumaira Foundation<\/span><\/a>, a patient organization that advocates for rare autoimmune diseases of the central nervous system. This project has made it clear to me that there remains a huge chasm between medical literature and patient access.<\/span><\/span><\/span><\/span><\/span><\/span><\/p>\n

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Below I quote from <\/span>a LinkedIn post<\/span><\/a> I had written to share my insights regarding the existing challenges for patients. <\/span><\/span><\/span><\/span><\/p>\n