Table 4 Patient themes and illustrative quotes

Information Blocking Rule is a good thing, thank you!

[I would say] well done. Because it was time that we can taking charge of our health. It's time to get access to that one, no use being area that you cannot read it, so you don't know what's going on. (P33)

I would say thank you, because I appreciate the right to have access my information. And what it makes me think of is the first time around [with my previous cancer] and the pathology slides and what happened to them. Then fast forward, 11 years, and I get this diagnosis, Eastpoint University is now trying to track down the slides. They want to see the actual slides and not just the report from 11 years ago. Oh, well, guess what? That facility disposed of them after 10 years. But nobody asked me, do you want us to get rid of them? But then I don't know how long do you keep pathology. That's a whole different thing, but that's what it makes me think of was, you didn't have the right to get rid of that without letting me know. (P7)

[I would say] Thank you for being compassionate to cancer patients that would get a scan and wait for two weeks to get results, because it is extremely stressful. And if it forces doctors to make these appointments closer together and be more patient proactive, bless you. (P14)

[I would say] good job because you're making it so us, as patients, can read what the doctors are saying to us clearly and accessibly and I like it. I like it. I've even had a doctor say, "Well you know you're going to read my notes, right?" And I'm like, "Yeah." I even read my oncology notes when I leave infusion where it's two sentences. Yes I access. She left without paperwork. She's the access. I read it just to make sure. (P11)

So to have that available to you so you can… I mean, if you want to vet it yourself and you want to go online, there are some really great sources online to really give you more information about whatever you've been diagnosed with. You know how to spell it, you know what stage its in, you know all the extra little things that they put after it like if this has a T79EM after it, that's different. If it says EGFR and ALK inhibitors, I can't remember that from my appointment or that's something I could start researching….I mean, it probably frustrates the doctor if someone comes in and they get it from a source that's maybe not the most reputable source. I'm sure that's frustrating for the doctors. But there are also people that are highly educated that can go in there and they can discern information from good and bad and they can come up with some really great questions for their doctors as well because doctors treat a lot of diseases and a lot of different people and they might not be up on everything. (P13)

I think, I think most people want to know and want to be involved and you know, some people just want the doctor to say show up at this time and you know, we're done, you know, we're gonna do what we're gonna do, but most people, and I'm always amazed when I talk to people who, um, maybe socioeconomically or educationally, I wouldn't expect them to be able to discuss it at a, that level, but they've, they may, they may not know a lot of things, but boy, they can talk to you about their disease in great detail and they know a lot of stuff. And I think it's a matter of, you know, you, you educate yourself on the things you need to know. (P31)

Everyone’s different

So I think to those lawmakers [I would say], it's a personal preference and that they should honor that for those people who can accept it or who cannot accept it. (P35)

I'm going to tell them that in any situation, you're going to have differing opinions. And I would just… I think politicians in government at this point, I don't have a lot of confidence, and the fact that I feel like it's all about self-interest and not really about people and about human emotion and empathy. I would just always encourage that before decisions are made, there's consultation not just by clinicians or policymakers, it's about people at the end of the day. We are people. And I get why the disclosure is… Thought that was a great idea. I can see why someone would do that, and I could see several people that probably really love that, but that doesn't speak to everybody, and I think it's a choice. (P6)

And so that's what I would ask policymakers. "Is this something that applies to your life? Do you get test results? Do you want your test results coming to you immediately without being informed or…" You know what I mean, "Do you want bad news coming to you instantly?" So I look at it in that way, basically treat people the way you want to be treated. (P16)

I think they get the information out in a timely fashion. I don't need if they need to be told to do that. Physicians are of the mindset that people need to know. I don't really think we needed a policy for you to tell doctors to tell us what we need to know. Because I felt like the information I'm getting, I get it in a timely fashion. So I don't think it's really necessary, but I don't make the policies but I think, and then in some instances, some people may feel they're not getting it, where I don't feel that way. So I would say to them, "I don't think y'all need to be told how to disseminate information to your patients." (P17)

Patient and clinician should decide

Maybe with the clinicians and the patient privacy, it has to be a personal … Maybe that physician says to that patient, "I know this is going to cause you a lot of anxiety. We're going to make an appointment. You're going to come in and we're going to have that face-to-face because you always sometimes think it's the worst." And especially, if you don't understand, our minds just naturally go, "Oh my God, I'm dying," or something. (P35)

I think the providers should share with us as much information as they have, and as they know that we can understand and absorb and respond to, to do whatever we need to do to make it better. (P22)

I like it but I… My blood work… Some simple things like blood work to me is okay. But I think if the doctor need to call you in and talk to you one on one, you don't need to have it from MyChart… It might say that the time I might have six months to live. I don’t think I would want to hear something like that on MyChart. (P15)

Before any negative information is put out, maybe the patient and the provider get together before and discuss it before it's provided. (P34)

Could have been implemented better

Transparency is great. I'm all for it. But it's the logistics, it's the details. It's the people who are the ones who are really getting the impact and the ones who really should be deciding like, "Hey, do we really need to be pushing all this out instantaneous like this?" Is it doing more harm or is it doing more good? To be decided. (P10)

What was the intent behind making that rule?

Interviewer:

Yeah. That's a good question. Are you asking me or is that what you would ask them?

Participant:

Both maybe. If you know the answer I'm asking you, but if you don't then yeah, I'd ask them that. What was the intent behind it? (P12)

I don't know what things were like prior to the law because I was a healthy person. I wasn't needing to look at things frequently. I could easily wait a week for my doctor to call me back or if I had a physical or something. So I think probably like a lot of laws or whatever, it just needs some tweaking and improvement. Don't want to go backwards, but it's probably been out there long enough that we all know what probably needs to be addressed. (P19)

Things like access to that and records, I love seeing the progress. I think the legislators are making progress and I've been there enough times to know. I had images of my head of how that whole process was going to work and they were all wrong. What I found was some incredibly smart, passionate people trying to maneuver in this really screwed up system. They're really trying to help make healthcare better. I believe the legislators, as a whole, are really trying but I think we have things that are just institutionally in place that are just completely screwed up and I don't know that it'll ever really get fully solved but what I want is for everyone to have access to the finest care without barriers. (P4)