Design, setting and participant recruitment
The study employed a descriptive qualitative design.14 A purposive sample of 11 participants from an interdisciplinary primary health care clinic in the province of Ontario, Canada, was identified. The seven patients, six of whom were 50 years or older, had at least one chronic condition including diabetes, hypertension, asthma, obesity, COPD, thyroid condition, hyperlipidemia and cancer. The four providers included two family physicians, one nurse practitioner and one family practice nurse.
Results
There was limited first-hand knowledge of patient portals among patient participants. Some made connections between patient portals and having used a portal at work or doing online banking. Providers had more knowledge of portals but no direct experience. Some participants talked about their current use of e-mail communication (between patients and providers) and made connections to how that might work in a portal.
There was substantial convergence between patients and providers regarding concerns and potential benefits of patient portals with an overall positive view. Four broad themes emerged from the data: 1) the context in which patient portal use takes place; 2) the necessary conditions for use of a patient portal; 3) the implementation of a patient portal and 4) the use of a patient portal for care (Figure 1).
Theme 1: context
Context included three subthemes: portal accessibility, provider workload and the primacy of the patient–provider relationship. Context was seen as being influenced by portal use (e.g. effect on patient–provider relationship) and influencing portal use (e.g. costs might prohibit use). Context was framed either positively or negatively. When negatively expressed, it was usually an issue to be grappled with, rather than an insurmountable barrier.
The first subtheme of accessibility to patient portals arose with respect to two related issues – computer literacy and the cost of portals. Participants worried that those who are not computer literate may be patients most likely to benefit from this technology but least likely to be able to access and understand it: ‘I don’t think I would have too much of a problem [using a portal]…but I think a lot of people would have problems’. – Patient 1.
Currently, patient portals are generally paid for by the patient. This could pose additional barriers and potential inequities for patients who cannot afford to pay: ‘[Sicker patients] may be the ones that can least afford a fee, but may have a very huge benefit from [portals].’ – Provider 1. However, providers and some patients felt that it was appropriate for the patient to bear the cost: ‘[Portals] better not have a [financial] impact on the health care system’. – Patient 7.
In the second subtheme, patients and providers identified potentially positive and negative effects on provider workload. A provider suggested a positive effect included improving work flow: ‘…You play phone tag... and it gets very frustrating on both ends…it could be much more efficient to communicate electronically’. – Provider 3.
Patients expressed concerns about the amount of time it would take providers to review communications: ‘It would just add one more thing the nurses have to deal with’. – Patient 2. However, most participants felt that with appropriate training and guidelines this could be avoided. One provider likened it to the current telephone system: ‘…patients don’t expect that I’m going to answer the phone. The same needs to be built into portals… maybe it’s the receptionist, the nurse who triage…sometimes questions to me’. – Provider 1.
The third subtheme under context was the primacy of the patient–provider relationship. Patients and providers expressed that like other tools, portals will be effective in so far as they are used within a positive patient–provider relationship. One patient captured this succinctly: ‘We don’t want to replace our wonderful health care professionals with just machines’. – Patient 7. Participants imagined that patient portals would be part of their health care, not a substitute for in-person care: ‘…the face to face…should still be available’. – Patient 1; and ‘You have to make sure the relationship is going to be established first. I wouldn’t “portal” with [just] anybody’. – Provider 2. Participants also emphasized that portals require trust and honesty. A patient stated: “it may be possible [to record my weight at home], it’s an honour system.” – Patient 7. A provider stated: ‘…the trusting relationship can grow electronically… but I think it takes a lot of sensitivity on the provider’s part’. – Provider 3.
Theme 2: necessary conditions
Necessary conditions included two subthemes: ease of use and security. All participants highlighted ease of use: ‘It would have to be dead easy; yeah it would have to be very simple’. – Patient 5.
They also expressed the need for security. Security was not described as a barrier but as the usual condition surrounding all on-line interaction: ‘When you do anything through a portal, even secured, people have to realize what they’re saying yes to’. – Patient 2. A provider stated: ‘Well certainly privacy is one [concern], it’s huge’. – Provider 3. Another patient expressed a common view that the transfer of information across providers should be limited: ‘If you go to a specialist, he shouldn’t have all the knowledge, he should only be limited to what he’s dealing with’. – Patient 1.
While overall computer security was mentioned, participants focused to a greater extent on confidentiality with respect to who has access to the portal: ‘I guess it’s a privacy issue, but it just makes sense that I would be the one who has access to it and nobody else’. – Patient 4. A provider stated: [Patients will ask] ‘Can I get into the portal of my kids, my husband and the only person…that can engage in their chart should be the person’. – Provider 4. Further, providers questioned their fiduciary responsibility: ‘Does [the provider] actually track…where the legal responsibility lies for making sure the [family member] has power of attorney?’ – Provider 1.
Theme 3: implementation
Participants were asked explicitly how providers might engage patients in the actual implementation of a patient portal, helping providers decide what and how to use a portal. Patients had difficulty identifying how they might assist in portal implementation and seemed surprised to be asked their opinions. In spite of this, both patients and providers were able to offer ideas of how portals should be implemented with three subthemes emerging: training, start slowly and customization.
While ease of use was described under Theme 2 as a necessary condition, participants still expressed the need for training as essential to successful portal use: ‘Don’t just hand [patients] the portal and expect them to go on their own, train them’. – Patient 1. It was also recognized that on-going support may need to be available: ‘[Patients may ask] what if I have problems that I can’t access that [portal feature]… who’s going to be my IT support’. – Provider 2.
Regarding the second subtheme of starting slowly, one approach was for practices to start by targeting specific patient populations:
Start small, make it available to people with diabetes first. Set up a pilot project [maybe] 50 patients. Monitor it, see how easy it is, unless you…start using it you don’t know how easy it is going to be. – Patient 7.
Another strategy was to start slowly with only a few functionalities: ‘Start with opening a couple of the areas…maybe just blood work first’. – Provider 2.
The third subtheme was that portal use needs to be customized for each patient. One patient expressed that each patient–provider dyad should have a conversation about how they would together use the portal:
[The portal] is going to be custom tailored to each person… it doesn’t need to be a long process. [Doctor would say] ‘Here’s the things that we can do. These are things I think would work for you, are there any other things that you’d like to have access to?’ [My provider] and I could [in] five minutes between us, figure out what would work. – Patient 4.
Within customization, providers expressed that clinicians need to show leadership in portal development: ‘What sort of things you’re going to implement…let the patient know this [feature] is or isn’t [available]… because the patients are going to have a wide variety of expectations’. – Provider 1. During implementation, portals should be discussed like any other management decision: ‘It would go back to any treatment or investigation decision … explain to the patient, know what is the potential benefits and detractors, and then see if they actually want to do it’. – Provider 1.
Theme 4: use of a patient portal
Use of a patient portal included the two subthemes: information sharing and communication and patient engagement. Regarding information sharing and communication, any mechanism that allows patients to obtain more information about their health was viewed positively by patients: ‘I think that’s the age we’re in now, people want to know…control their life a little bit more if they know things…just that sharing of information is real important’. – Patient 4. Some providers echoed the value of information in and of itself: ‘…the age that we’re into is everybody wants information and they want information quickly… So a lot of people realize the value in having information about themselves to make decisions for their health care…’ – Provider 1.
Specifically, patients and providers tended to refer primarily to accessing lab results. Patients and providers alike worried about the best way to communicate bad news concerning test results as well as the inability of patients to understand and interpret what they are seeing. A patient stated: ‘…if [the portal] was developed…keep everything…in everyday language because I find…that if people don’t have all the information or education…they can take things out of proportion’. – Patient 6. And a provider expressed: ‘…knowing the patient who’s using the portal and whether or not they would have an understanding of the record. There are some patients I wouldn’t want using portals because it may be more alarming for them’. – Provider 3.
While providers saw benefits to patients entering information into a patient portal, there was concern about maintaining a medical record.
…it would be good for patients to send us information [such as address changes]… [but] you don’t want them fiddling with the history, they can dispute it…but I want my record… to look the same as what I put in there… – Provider 4.
The second subtheme was that portals could facilitate the engagement of patients in their own health and health care. A provider stated: ‘[It’s] a shift to people being part of their care and helping to make the decisions, so they need the information to actually be more of an active participant in their health care plans’. – Provider 1.
Patients were asked directly about inputting their own information into the portal and indicated an interest in inputting clinical values into the portal for information that they track at home: ‘…keeping up to date with my progress…if I was able to input blood sugars…would benefit my health practitioners… I think that would be beneficial to keep everyone in the loop about what’s going on with me’. – Patient 6. Some participants saw using clinical information from a patient portal as a way of monitoring the patient’s condition over time: ‘The most useful thing for me would be to look at the lab reports, quarterly…I would like to see those. I would like to see probably prior ones, maybe going back for a number of years’. – Patient 3. Patients were also interested in knowing where they stood against other patients and clinical norms: ‘I don’t want to just see my own records but I want to be able to compare myself to other people with the same condition… see what the general population with diabetes was achieving’. – Patient 3.
