Table 3

Phase 1 findings
Group Theme Subcategory Quotes
Breast cancer patients (n =21 ) Type of information Tailoring information to patient’s needs One of the shortcomings is that there was very little preparation for any of the things that were coming. So there was a feeling that I scrambled a lot to understand whether what I was experiencing was completely normal, or whether it was something I should be paying attention to. And then figuring out if I needed to do something about that, or not.” (PRIP3)
“ That’s a big thing too, is that the demographics of this population are changing. It’s a huge shift where we’re getting younger and younger and younger. … there wasn’t a lot of information for people below a certain age group.” (PRFG1P4)
Type of information Importance of human resources (e.g. peer support) I thought a peer counselling person to actually help someone through the process and through the challenges that exist would be a good idea. “ (PRFG1P9)
“ … whether it’s a mentor in a hospital, whether it’s a nurse who at least is a specialist. But information isn’t good enough because it’s too overwhelming. And I think the right information at the right stage is the real challenge … but it isn’t just information.” (PRFG1P7)
Timing of information Tailoring information to the patient’s needs (including stage of care) “Did you really give me the information when you did that, when you handed me a bag? Because you have to take in (to account) who the people are, and they are overwhelmed. So you need to give them the specific information in a timely way, and ensure they have the right information at the right time. I went home with a bag of information. There was no direction: here are some of the important themes you may want to pay attention to” (PRIP3)
“ I think when you are diagnosed and you are going through treatment there are so many things coming at you … you have so much information that’s given to you to read that you need someone … almost a coordinator who comes into day care and you can walk through all of those things with someone…” (PRFG2P4)
Timing of information Transitioning to follow-up care: questions about roles and responsibilities “I do have a concern about falling off the edge of the cliff, in the sense of, all of a sudden, do you just disappear? Will I have the same sense that my physical health is being monitored?” (PRIP3)
Relationship with FP “ In fact, throughout this whole process my family physician wasn’t involved at all … prior to this I was never really sick. So I didn’t see my family physician very often. So even to this day, I have more of a relationship probably at (oncology team)…” (PRFG1P5)
“…in between all of my sessions, I would actually go and see him (family physician), just to bring him up to speed so he was part of the team … he and I have a fantastic relationship …he’s a really great GP. And I won’t give his name up! He’s amazing, and I think he’s helped me because of that.” (PRFG1P6)
Need for SCP “ …I think the challenge is for the environment to provide access to information and support around it” (PRFG1P2)
Family physicians (N = 8) Type and timing of information Access to timely information “ … I think for me it’s the timeliness, so … I’m getting it two months down the road. So, more often I’ll have the patients come back and see me and I’ll be “Okay, what did the specialist say to you? What should we do, what’s the plan?” And I find I’m talking more to the patients instead of getting the reports or the information from the specialist. So, it would be nice even to get something preliminary you know, just the plan …” (PRFGFP3)
“I guess I don’t have a huge number of, of breast cancer patients but one of the main issues again is about timelines . The information that I have received has arrived you know, months later and at that point it’s not very useful ….you don’t have the information on hand to talk to the patient when it’s, when it’s relevant.” (PRFGFP2)
Roles/ Responsibilities Feeling ill-equipped to manage follow-up care “ We don’t always know the subt-, subtleties of the different findings and … what the implications are for prognosis and sometimes … it gets missed … but without us knowing it’s kind of, it makes things difficult, or it’s a lot of work for us to go digging into the pathology and the lymph nodes and trying to figure out what, what does that really translate into?” (PRFGFP7)
“ Just give some kind of guidelines about what’s appropriate to monitor and … how long they should be on the medication, whether they need, it needs to be reassessed at some point by someone, the side effects of medications … but in the longer term, outside of that acute phase.” (PRFGFP4)
“So I think in general, the biggest problem is that patients feel very lost after they’ve left. They’re very anxious that every symptom or everything (that) happens is related to their disease. And that family physicians are probably not well trained enough in this area and other areas of oncology that they don’t know how to decipher a lot of this either, and how to communicate that, and how to incorporate that into training or how to get them that support that they need for them to feel comfortable are the biggest issues.” (PRIFP2)
Relationship with FP “ when we mention to them possibly discharging them back to their family doctors, they feel that their family doctors have either not examined them throughout their treatment process, may not know what they’re finding, some still feel that their family doctor has missed the diagnosis, and that’s the biggest gap, they’re just not comfortable. And likewise, oftentimes we’ll get referrals back from old survivors who have minor problems that could be dealt with by the family doctor, but the family doctor is not comfortable dealing with it.” (PRIFP2)
Specialist HCPs (n = 6) Type and timing of information Transitioning to follow-up care: suggested approaches So if you’re talking about survivors then and they finish their last chemo and then they say “Now what?” … if they could get something that they can take away with them, okay, follow-up every 3 months and …what other tests do they need and what(’s the) follow-up time? When do they see the medical oncologist? … Where does the family doctor fit into this? So, that if when a patient leaves after their final chemotherapy they have sort of a, a vision of …. how that’s going to look down the road, next year, next 2 years. (PRFG1OHCP4)
Roles/responsibilities Sharing responsibility for follow-up care with FP “… but we’re not always sure if they (FPs) receive all the reports in a timely fashion. I think it’s the whole entire medical kind of system. Good news is no news … If everything is fine, then you’re not going to hear from me. Sometimes information is faxed, they may not get it in a timely fashion, sometimes things may get missed … I think we still have to follow up to make sure that the physician gets the report, so things don’t get missed.” (PRIOHCP7)
Need for SCP Sharing information with BCPs I’ve had patients come to me and say ‘Well you know, so what do I do now?’ And they’ve already got (papers) and appointment books and other things and they just don’t even know it. And maybe they forget or they didn’t hear it or they’ve lost the little piece of paper … But maybe if we have something that they can take away with them….” (PRFG1OHCP2)
Importance of timely information sharing between OHCPs and FPs Having a really good system in the computer, so it’s easier to track and follow patients. …. and like a sheet that comes out and says that on such and such a date she (patient) was here for a mammogram. If all the information could just kind of appear about this individual….” (PRIOHCP7)

Haq et al.

Haq et al. BMC Medical Informatics and Decision Making 2013 13:76   doi:10.1186/1472-6947-13-76

Open Data