. Author manuscript; available in PMC: 2021 Dec 1.

Published in final edited form as: Pharmacogenet Genomics. 2020 Dec;30(9):191–200. doi: 10.1097/FPC.0000000000000413

Table 3.

Patient insights on features of an effective patient portal with representative quotations.

THEME	REPRESENTATIVE QUOTATIONS
1. Clear layout/easy to navigate ᠅ “And it wasn’t like you had to go through some very long thing to get to everything.. it’s like boom boom boom.” ᠅ “I liked it, it was easy to navigate.” 2. Consistency ᠅ “I’m not sure that if you have a very simple first two pages, you don’t need to at least do something similar on the third page.” ᠅ “I think it would be consistent, you would use that language where, replace where it says favorable, so that the language is consistent across the top of the ledger.” 3. Font size ᠅ “I thought the printing was large enough because I left my reading glasses at home.” 4. Clear and concise content ᠅ “I thought it was straightforward, which I appreciated.” ᠅ “It was enough. Sometimes a lot can be said with a few words.” ᠅ “I like this because it’s not much but it tells you everything. It’s much better than trying to read the back of a prescription bottle.” 5. Simple layperson’s language ᠅ “I do believe in having it in layman’s terms so that everyone can understand I think when you make it very simple for people, it keeps them interested.” ᠅ “You’re also not doing it necessarily for academics and scientists, you’re doing it for lay people.” ᠅ “No because when it comes to the med, to the biologies or, there’s always going to be large terms, and I think it’s important for us to learn it instead of dumb down.” ᠅ “I think too like some of those words are just part of what you do, like you know, pharmaco.. pharmacy. That is just something you can’t not have on there. And you know, like the name of the drug, if that’s something that’s hard for you, but it’s what you’re taking. So I think some of those things, you can’t really get rid of.” ᠅ “I think it helps, most people know what metabolism is this day and age. What are you going to replace it with? You know? And then it says this means you carry a gene that predicts poor pain relief.” ᠅ Why not have a thing about you know, this discipline of what is then, and people can read that if they want to.” ᠅ “Can you have like a simple thing, and then go deeper. Like I mean kind of a link to a little bit more of a robust, you know, explanation.” 6. Use of symbolism/graphics ᠅ “I do like the fact that you had the green light, red light, yellow light. That was pretty good because that actually let you know, everyone knows what stop lights are even if you don’t drive.” ᠅ “No I think it’s good because it’s showing you exactly where you might develop the pain.” ᠅ “It’s perspective. It shows you, you visually how, how the break down is. And for someone who’s visual I think that’s very helpful.” ᠅ “I got more form the words than from the picture, I got more from the top part where it shows areas of the body than the bottom.” ᠅ “Your graphic in itself is not complete. You have to read the bullet points down below to understand it.” 7. Use of colors ᠅ “Like as soon as I saw it, ok green is like ok to take, it’s good to take. Yellow is like, take it, but take it with caution. And then, you know, the red was like, do not take” ᠅ “But for me, it’s easy to look at that right away because based on the darker color, those are the low risk, but then look at the very pale all the way to the right, you know, you don’t see many, so basically the same type of thing” 8. Use of bullet points ᠅ “The bullet points are helpful.” ᠅ “I love the bullet points.” 9. Quantifying information ᠅ “If it says 2% chance of having a stroke that’s different, but 12% is a lot” ᠅ “You know how you were talking about how the green one just says it’s good? Is there any way to like put more like statistical stuff, like you know like you did with the one that was a red light? Like the green light, just something else under that says it’s a good thing? I mean sometimes it’s nice, you know, if you’re giving all this for the bad stuff, it’s kind of nice to know how much of a chance there is of it working for you.” 10. Alternative medications ᠅ “But that second point, the way it gives you alternatives, that’s very important.” ᠅ “Because I think a lot of times, at least with those types of drugs, like there are a lot of options out there. There’s omeprazole, there’s lansoprazole, pantoprazole, there’s lots of them. And just to see where you would fall on the category of different medications might be beneficial?” 11. Information on population risk ᠅ “I do like the fact it tells you how many people have the same genetic makeup as you for that particular, for every 100 people about 5 people have the same genetic makeup. I think that’s just really interesting information, and I like that.” 12. Inform/educate but not give medical advice ᠅ “Put a little disclaimer, you know, talk to your physician.” ᠅ “But the point that was just raised more things you should put on there. You’re making an affirmative statement about something, and the idea of liability gets greater and greater.” ᠅ “That’s why I think you should have on there, ‘if you’re having muscle pain, consult your doctor’. That way they’re the ones giving the advice, not here.” 13. Information sharing and linking to electronic health records (HER) ᠅ “And I think it would be good if it was with myChart, because you can go in and see your medications, see your refills. And so if it’s all in one instead of having to go to separate portals. I think it would be easier for the use and for us to be educated as patients, and also as doctors so they can see it all in one.” ᠅ “Aren’t the major hospitals like, University of Chicago, Northwestern, Loyola, already linked through myChart? Yeah, they already talk to one another.” 14. Phone/app enabled access ᠅ “Let’s say you’re seeing someone else, and they don’t have access to that information, it would be nice to be able to pull it up and be like ‘here I’m in this study, and here is what this is saying’. I think I’m also just visual, and so being able to have that information accessible while I’m somewhere else could be beneficial.” ᠅ “If you can build an app and it has the graphics that will allow you to visualize this stuff, that would be great. A lot of people do now access this information through a PC, because they don’t have one or they don’t have the internet through that thing.” 15. Information security ᠅ “the only bad thing about having a direct link is security, because I don’t think probably myChart is all that security conscious. I’d want at least two factor [authentication]”.

THEME

REPRESENTATIVE QUOTATIONS

1. Clear layout/easy to navigate
᠅ “And it wasn’t like you had to go through some very long thing to get to everything.. it’s like boom boom boom.”
᠅ “I liked it, it was easy to navigate.”
2. Consistency
᠅ “I’m not sure that if you have a very simple first two pages, you don’t need to at least do something similar on the third page.”
᠅ “I think it would be consistent, you would use that language where, replace where it says favorable, so that the language is consistent across the top of the ledger.”
3. Font size
᠅ “I thought the printing was large enough because I left my reading glasses at home.”
4. Clear and concise content
᠅ “I thought it was straightforward, which I appreciated.”
᠅ “It was enough. Sometimes a lot can be said with a few words.”
᠅ “I like this because it’s not much but it tells you everything. It’s much better than trying to read the back of a prescription bottle.”
5. Simple layperson’s language
᠅ “I do believe in having it in layman’s terms so that everyone can understand I think when you make it very simple for people, it keeps them interested.”
᠅ “You’re also not doing it necessarily for academics and scientists, you’re doing it for lay people.”
᠅ “No because when it comes to the med, to the biologies or, there’s always going to be large terms, and I think it’s important for us to learn it instead of dumb down.”
᠅ “I think too like some of those words are just part of what you do, like you know, pharmaco.. pharmacy. That is just something you can’t not have on there. And you know, like the name of the drug, if that’s something that’s hard for you, but it’s what you’re taking. So I think some of those things, you can’t really get rid of.”
᠅ “I think it helps, most people know what metabolism is this day and age. What are you going to replace it with? You know? And then it says this means you carry a gene that predicts poor pain relief.”
᠅ Why not have a thing about you know, this discipline of what is then, and people can read that if they want to.”
᠅ “Can you have like a simple thing, and then go deeper. Like I mean kind of a link to a little bit more of a robust, you know, explanation.”
6. Use of symbolism/graphics
᠅ “I do like the fact that you had the green light, red light, yellow light. That was pretty good because that actually let you know, everyone knows what stop lights are even if you don’t drive.”
᠅ “No I think it’s good because it’s showing you exactly where you might develop the pain.”
᠅ “It’s perspective. It shows you, you visually how, how the break down is. And for someone who’s visual I think that’s very helpful.”
᠅ “I got more form the words than from the picture, I got more from the top part where it shows areas of the body than the bottom.”
᠅ “Your graphic in itself is not complete. You have to read the bullet points down below to understand it.”
7. Use of colors
᠅ “Like as soon as I saw it, ok green is like ok to take, it’s good to take. Yellow is like, take it, but take it with caution. And then, you know, the red was like, do not take”
᠅ “But for me, it’s easy to look at that right away because based on the darker color, those are the low risk, but then look at the very pale all the way to the right, you know, you don’t see many, so basically the same type of thing”
8. Use of bullet points
᠅ “The bullet points are helpful.”
᠅ “I love the bullet points.”
9. Quantifying information
᠅ “If it says 2% chance of having a stroke that’s different, but 12% is a lot”
᠅ “You know how you were talking about how the green one just says it’s good? Is there any way to like put more like statistical stuff, like you know like you did with the one that was a red light? Like the green light, just something else under that says it’s a good thing? I mean sometimes it’s nice, you know, if you’re giving all this for the bad stuff, it’s kind of nice to know how much of a chance there is of it working for you.”
10. Alternative medications
᠅ “But that second point, the way it gives you alternatives, that’s very important.”
᠅ “Because I think a lot of times, at least with those types of drugs, like there are a lot of options out there. There’s omeprazole, there’s lansoprazole, pantoprazole, there’s lots of them. And just to see where you would fall on the category of different medications might be beneficial?”
11. Information on population risk
᠅ “I do like the fact it tells you how many people have the same genetic makeup as you for that particular, for every 100 people about 5 people have the same genetic makeup. I think that’s just really interesting information, and I like that.”
12. Inform/educate but not give medical advice
᠅ “Put a little disclaimer, you know, talk to your physician.”
᠅ “But the point that was just raised more things you should put on there. You’re making an affirmative statement about something, and the idea of liability gets greater and greater.”
᠅ “That’s why I think you should have on there, ‘if you’re having muscle pain, consult your doctor’. That way they’re the ones giving the advice, not here.”
13. Information sharing and linking to electronic health records (HER)
᠅ “And I think it would be good if it was with myChart, because you can go in and see your medications, see your refills. And so if it’s all in one instead of having to go to separate portals. I think it would be easier for the use and for us to be educated as patients, and also as doctors so they can see it all in one.”
᠅ “Aren’t the major hospitals like, University of Chicago, Northwestern, Loyola, already linked through myChart? Yeah, they already talk to one another.”
14. Phone/app enabled access
᠅ “Let’s say you’re seeing someone else, and they don’t have access to that information, it would be nice to be able to pull it up and be like ‘here I’m in this study, and here is what this is saying’. I think I’m also just visual, and so being able to have that information accessible while I’m somewhere else could be beneficial.”
᠅ “If you can build an app and it has the graphics that will allow you to visualize this stuff, that would be great. A lot of people do now access this information through a PC, because they don’t have one or they don’t have the internet through that thing.”
15. Information security
᠅ “the only bad thing about having a direct link is security, because I don’t think probably myChart is all that security conscious. I’d want at least two factor [authentication]”.