





































       V37 N4 / 2022 

©2022 American Medical Writers Association. All rights reserved.  
ISSN 2163-5315

AMWAJournal.org     25

Information may be provided to a broader range of consum-

ers. No longer will results of studies be limited to regulators 

and scientific/medical cognoscenti. With greater access to 

posted documents on a variety of portals, the public will seek 

and access information that is important for informed deci-

sion-making. The patient will have a stronger voice in deter-

mining their treatment, and this will extend to end-of-life 

decisions. Social media will amplify results and will spread 

misinterpretations and poor-quality data. Caveat emptor!

Are you scared or excited (or both!) by the increased use 
of social media to communicate scientific information? 
What can medical writers do to help stop the spread of 
misinformation?

Samuel Entwisle: I would say both! I’m not very comfort-

able with social media myself, so the idea of engaging with 

these platforms and communicating medical information 

on a regular basis is a bit anxiety-inducing. But I think this 

can be an important role for medical writers, especially as 

rabbit holes of misinformation on social media can make 

finding accurate information difficult. I do think there is a 

great opportunity for collaboration between medical writ-

ers and online content creators who are savvy with how to 

get good social media engagement. And we should make as 

many plain language materials as possible free, available, 

and easy to discover online so that content creators can 

access them. I think it’s essential to build increased literacy 

about clinical research, and social media will have to be a 

big part of that.

Zack Fey: I’m with Sam on this one. Regarding the surge 

in the sheer quantity of avenues to access scientific infor-

mation, I could not be more excited. But, when it comes to 

social media specifically, I am more apprehensive. There 

is a seemingly infinite number of posts, articles, photos, 

and videos competing for attention on social media. And I 

have found myself and others skip over a scientific article in 

favor of something that takes less effort to read or is some-

thing more immediately captivating. It will be a challenge to 

create interesting and accurate scientific content that is able 

to compete on the mainstage of the ever-expanding uni-

verse that is social media.

Samuel Entwisle: Absolutely. If you’re trying to compete 

for attention on social media, the way to do that is by having 

big, flashy, or controversial headlines, not through nuance 

or data that is presented in a neutral way. This is the world 

we live in. But we still need ways to counteract the bad 

information that tends to go viral, to “develop antibodies” 

against it, you could say. Maybe it’s rare that a piece of neu-

trally presented clinical trial information will explode on 

Twitter. But maybe that’s okay! We can still make it as easy 

as possible for people who are actively seeking this type of 

information to access it, and then measure our success by 

making sure that people are in fact accessing it. Some clini-

cal trial sponsors are starting to think about this more seri-

ously now, but we can definitely do better.

Kimbra Edwards: Social media plays an extremely pow-

erful role in people's lives today. For better or worse, many 

turn to their social media feeds for information on a variety 

of topics, including scientific information. Scientific infor-

mation communicated through social media often uses 

catchy headlines and abbreviated formats, which serve as 

a quick and convenient way to consume information in a 

world where it feels mandatory to stay in-the-know and 

offer an opinion on a given hot topic. As my colleagues have 

What About the Audience?

THEME ARTICLE

SPEAKERS
Samuel Entwisle, PhD / Medical Writer, Center for Information and Study on Clinical Research  
Participation (CISCRP), Boston, MA
Zack Fey, BS / Medical Writer, Center for Information and Study on Clinical Research  
Participation (CISCRP), Boston, MA

Kimbra Edwards, PhD / Associate Director of Medical Writing, Center for Information and Study on Clinical Research 
Participation (CISCRP), Boston, MA

http://www.amwajournal.org


AMWAJournal.org     26What About the Audience?

stated, a primary concern with social media is the spread of 

misinformation. Misinformation seems to spread on social 

media either because important nuances aren’t captured, or 

someone uses the platform to speak on a topic without fully 

understanding it.

 So, what can medical writers do to help counteract mis-

information? One option is to use your own social media 

to spread accurate scientific information, either by writ-

ing your own posts or simply sharing posts from verified 

sources to increase their visibility. If social media isn’t your 

thing, another option is to utilize the appealing aspects of 

social media in your work. This could include using concise 

language, explaining the “so what?”, and exploring alterna-

tive formats such as videos.

How can medical writers enhance the quality of docu-
ments made available to the public?

Zack Fey: As medical writers a (or dare I say, the) key skill 

we are always improving is our ability to communicate. 

Communication is important in every aspect of life and 

especially when creating something for others to read and 

engage with. Getting to know the audience we are writing 

for helps first and foremost. After that, we are tasked with 

putting words on paper in a way that best speaks to the 

target audience. It is easy to accidentally lose sight of your 

audience from behind your computer screen and favor your 

own grammar, structure, and clarity preferences. But that is 

the everyday challenge we happily accept.

Samuel Entwisle: Yes, getting to know our audience is so 

important, and it’s easier said than done. I think Zack is 

right on that we must have a degree of humility about it and 

not get too married to our own opinions about what good 

writing looks like in other contexts. User testing can help 

a lot with that. And I think life experience helps as well, 

which is another reason why diversity in culture, race, class, 

gender identity, and so on is so important for good medical 

writing. I also really value close collaboration with editors 

and graphic designers. You could be writing the clearest, 

best sentences in the world, but if they are not formatted in 

a friendly way, or if they’re not accompanied by graphics 

that draw you in and lead you along, then I think you’ll be 

missing opportunities to engage with your target audience.

Kimbra Edwards: One way for medical writers to enhance 

the quality of documents written for the public (or any audi-

ence, really) is to write them in plain language. Utilizing 

plain language best practices allows you to communicate 

more effectively. Another way, as stated above by my col-

leagues, is to consult with others who have expertise outside 

of yours. These experts might include graphic designers, 

editors, or patients. Lastly, it is important to actually apply 

the learnings from these experts (for example, don’t ask 

patients for their feedback to simply check a box).

What are some strategies medical writers can use to 
ensure data and information are communicated accu-
rately but still in a way the reader can understand? How 
do you best balance scientific accuracy with clarity?

Samuel Entwisle: This is always the challenge, right? I write 

a lot of plain language summaries of clinical trial results, 

and one thing I try to tell myself is there’s no such thing as 

perfection. It helps to approach these plain language mate-

rials with a sense of priorities. What are the most important 

take-home points that we need to convey? In my case, this 

would usually be the results of the primary endpoint of the 

trial, and maybe a secondary endpoint, plus some key safety 

data. Once we now have this in mind, we can work back-

wards and ask what the reader needs to have a great under-

standing of these take-home points. If a certain concept is 

critical for this understanding, we can spend some time and 

really explain it. If not, we can give it more superficial treat-

ment or omit it entirely. But there will always be trade-offs, 

and people may not always agree on how to navigate them.

Zack Fey: I am generally a proponent of presenting some-

thing in the most concise way possible, especially in plain 

language documents. Recently, I have been writing a lot of 

2-page plain language protocol synopses for clinical trials 

based on the European Union Clinical Trials Regulation. 

When space is at a premium, I may omit the explanation of 

a term entirely instead of including a superficial explanation 

that may confuse the reader more. In the future, we may 

be able to offer an optional third page of the synopsis with 

a glossary of terms. Clarity and accuracy can easily coexist 

under the right conditions.

Kimbra Edwards: Like Sam, I find remembering the bigger 

picture key. What exactly do you want readers to walk away 

with? Writing with this in mind, it becomes more obvious 

how best to position data and other information. When con-

sidering the balance between scientific accuracy and clarity, 

I also think about the balance between complete transpar-

ency and thoughtful data selection. Of course, it is import-

ant not to cherry pick positive data, but it is also important 

to not overwhelm the reader with copious amounts of data 

http://www.amwajournal.org


AMWAJournal.org     27What About the Audience?

that might be misinterpreted. For example, patients and the 

public tend to assume that all adverse events are caused by 

the study treatment, even when it is clearly explained that 

this is not the case. This can give the impression that the 

study treatment is less safe than it is. Thus, writers of plain 

language summaries of clinical trials should consider only 

including possibly related adverse events above a thought-

fully determined frequency threshold.

What are some ethical concerns when writing for 
patients and the public? How can we as writers best  
mitigate these concerns?

Zack Fey: One of the biggest ethical concerns is the source 

of funding and information. Medical writers must accu-

rately, fully, and nonpromotionally convey scientific infor-

mation to patients and the public while still meeting the 

sponsor’s requests and needs for a given project. Often, the 

needs of the public and a sponsor can seem at complete 

odds with one another. With a title like “medical writer,” 

someone may think all we do is sit at a keyboard and type 

about science. What I’ve learned is that while writing is a 

large part of the job, learning to successfully compromise 

on complex topics to provide useful documents is more 

the task at hand. A medical writer must take seriously the 

duty of being one of the checks and balances to all scientific 

information that reaches the public.

Samuel Entwisle:  Compromise is an important skill for 

medical writers, especially those balancing the interests of 

trial sponsors and patients. One thing that can help a great 

deal is defining detailed processes and templates that the 

writer and the clinical trial sponsors agree to. This can pre-

vent some difficult situations when deciding, for example, 

which endpoints or safety data to include in a plain lan-

guage summary, or whether to refer to a drug by its trade 

name. Mutually agreed-upon processes and templates can 

help to keep plain language deliverables nonpromotional. 

Ultimately, increased literacy about health and clinical 

research is in everyone’s interest.

Kimbra Edwards: Much of the “friendly friction” we 

encounter with sponsors arises from disagreements on 

data inclusion and the overall messaging of the results 

because we strive to present results in a nonpromotional, 

neutral way. Luckily, we work with collaborative spon-

sors that respect the CISCRP’s independent positioning 

and patient-centered approach, so typically this friction is 

resolved after a brief explanation of why we do things the 

way we do them. It is important that other medical writers 

working with sponsors (or other stakeholders with varied 

interests) feel comfortable enough to uphold the high ethical 

standards that come with writing for patients and the public.

What are the benefits and challenges of user-testing doc-
uments with the intended audience (public, patients, 
health care providers, etc.)?

Samuel Entwisle:  I think the benefits of user testing are 

clear. In general, getting feedback from your intended audi-

ence is essential for a writer. It is crucial to get input from 

all stakeholders, especially patients and the public, regard-

ing how information about medicine and clinical research 

is communicated. We are lucky enough to work at an orga-

nization in which almost every deliverable we create is user 

tested by a review panel of patients, patient advocates, and 

members of the public. This gives us confidence that we are 

creating high-quality deliverables, and it has also led us to 

accumulate a great body of knowledge and the best practices 

about how to best communicate about clinical trials in a clear 

and humane way. One challenge, I think, is that we want 

to avoid over-correcting. For example, if one person makes 

a comment that they don’t like how a certain concept is 

explained, but 9 people like it best the way it is but say noth-

ing, we want to make sure we don’t fix what isn’t broken.

Zack Fey: A challenge I see with user testing is that the 

public, patients, and health care providers can provide feed-

back that is too general. A comment such as “this is good,” 

for example, isn’t very helpful. Like Sam said, user test-

ing is great to build the “confidence that we are creating 

high-quality deliverables,” but the best feedback takes time 

and active engagement from the reviewers. Finding review-

ers that are willing to give up their time to provide quality 

feedback that will translate into an improved deliverable is 

no easy task.

Kimbra Edwards: Another challenge with user-testing doc-

uments with their intended audience is the extra time it 

takes. There is no doubt that the feedback obtained by user 

testing can be valuable, but with strict deadlines, it can be 

a real challenge to fit meaningful user testing into a project 

timeline. One strategy is to start your project as early as pos-

sible. Plain language trial results summaries can have strict 

posting deadlines. To meet these deadlines and still have 

time for user testing, we have started drafting the summa-

ries based on the tables, figures, listings document instead 

of the clinical study report, which can often take much 

http://www.amwajournal.org


AMWAJournal.org     28What About the Audience?

longer for sponsors to finalize. If you can’t start your project 

any earlier, another strategy is to start recruitment for the 

user testing far in advance. Having your reviewers in place 

and ready to go, with clear deadlines and expectations com-

municated, is very helpful.

Author declaration and disclosures: The authors note no  
commercial associations that may pose a conflict of interest in 
relation to this article.

Author contact: kedwards@ciscrp.org

BIOSUMMARIES
Kimbra Edwards is the Associate Director of Medical 

Writing at the Center for Information and Study on Clinical 

Research Participation (CISCRP). CISCRP is a nonprofit 

organization focused on increasing awareness and under-

standing of clinical research participation. Edwards helps 

oversee the creation of easy-to-understand trial resources 

for patients, participants, and the public. This work uti-

lizes a patient- and community-centric approach to build 

accessible and engaging content. Edwards earned her 

BS in Neuroscience from Trinity College and her PhD in 

Developmental and Brain Sciences from University of 

Massachusetts Boston.

Samuel Entwisle is a Medical Writer at the CISCRP. 

Entwisle helps to create plain language trial results summa-

ries and plain language summaries of publications among 

other lay-language resources. Entwisle earned his BS in 

Biochemistry from the University of Maine and his PhD 

in Molecular and Cellular Biology from the University of 

Washington.

Zack Fey is a Medical Writer at the CISCRP. Fey helps 

create easy-to-understand trial resources, including plain 

language protocol synopses and plain language trial 

results summaries. Fey earned his BS in Economics from 

George Washington University and did a postbaccalaureate 

premedical program at Tufts University.

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