Results
Participant characteristics
The study sample included eleven physicians, 38 to 75 years of age, ten working in primary care and one in psychosocial care in the reception centers. They reported 30 to several hundred patient contacts in this setting per week and have been providing care for asylum seekers seven months to seventeen years. Most physicians were additionally working in their own practices or at university hospitals in the region. The six nurses included in the study (35 to 58 years of age) were employed either part time or full time at the reception centers. Most had worked in hospitals or private practices prior to working in the reception center.
The participating physicians unanimously regarded knowledge about a patient’s medical history as crucial to the delivery of high-quality care and emphasized its special relevance in the reception center setting. They explained that their consultations and therapies were particularly reliant on the availability of medical health records because obtaining information from the patient is often impeded by language barriers. However, they reported problems in access to medical history stemming from consultations both inside and outside the reception center.
“[…] that’s the crux of the work out there, that it is so difficult to get information, above all because of the interpreters and language situation” (D11).
Access to written information about consultations by colleagues within the reception center varied between study sites, largely because each had adopted a different electronic or paper-based health record system. Participants from the largest reception center (PHV) described that two different electronic health record systems had been implemented, each used by a different group of doctors and without access to or integration with the other. This was reportedly due to sectoral and legal barriers regarding physicians’ organizational affiliation. Participants working at PHV bemoaned the effect of this situation on access to medical history:
“Sometimes we are really at a loss because the health record systems are so different [from one another] [...] with regards to access to information this is a catastrophe” (D11).
Participants from reception centers with a small number of medical staff appeared to be more satisfied with the current state of internal communication.
Information about external consultations was reported to be often unavailable. Study participants said that patients rarely bring back written documentation after external consultations and external doctors often did not send reports to the reception centers’ medical departments. This would result in lengthy searches to find out where the patient had been and phone calls with the respective doctor to ask for medical information.
“What we often see is that, he [the patient] has seen a dermatologist, but which one. A urologist, in the hospital, [or] in a private practice, where did he end up? Nobody knows, until we’ve called around, or found the right person at the coordination desk, someone, who has the time, to ask around, make phone calls and ask where he [the patient] has been” (D1).
To remedy this problem, participants from several reception centers had painstakingly developed networks of cooperative doctors.
“Yes, we send patients preferably to doctors that provide us with documents. We have a list of doctors […] to whom we send [patients] […] they send us [their] doctor’s notes” (D5).
“It was hard work to establish such a network [of cooperative doctors], and it was critical [for the availability of medical reports from external doctors]” (D6).
No interview reported patients bringing personal health records from their country of origin. Some, however, described rare instances of doctor’s notes from the patient’s country of origin or from transit countries such as Turkey.
“Then they show something in Turkish or Kurdish and then, well… I can’t really do much with that. Except for the medical terms, yes, if it says “haemoglobin”, then I can recognize that” (D9).
PHR implementation – Process and barriers
The health care personnel described the first weeks after PHR introduction as a transition and adaptation period, in which they needed to get used to the new tool and overcome emerging barriers to its integration into their daily routine (for a summary of implementation challenges and facilitators, see Table
1).
Table 1
Implementation challenges and facilitators
Working conditions | High demand, low support | Supportive working environment |
| Stress, high work load | Support by nurses |
| Limited resources | Support by interns/students |
| Strained relationships with patients | |
Patient management | Low patient adherence to the PHR | High patient adherence to the PHR |
| New PHRs are handed out to the same patient multiple times | Encouraging patients to retrieve their PHR in case they have forgotten |
| Patients do not receive appropriate information about the PHR | Patients receive appropriate information about the PHR and understand the relevance for their medical treatment |
Local PHR practices | Low physician adherence to the PHR | High physician adherence to the PHR |
| Physicians receive no or insufficient information about the PHR before implementation | Strong involvement by nurses, e.g. preparing the PHR prior to the consultation |
| Documenting in multiple paper-based or electronic health records | Printing electronic PHR and storing it in the patient-held PHR’s document pocket to lower workload |
| Illegible handwriting | Using the PHR as a folder for all relevant documents |
Potential benefit of a patient-held PHR | Low perceived benefit in settings of low fragmentation | High perceived benefit in settings of high fragmentation |
| Well-established electronic PHR accessible to all health care providers in the facility | Absence of electronic PHR or more than one electronic PHR system |
| Small number of personnel | Large number of personnel |
| Close collaboration and personal communication with external doctors prior to PHR introduction | Dissatisfaction with availability of medical history and communication with external doctors prior to PHR introduction |
| Mono-disciplinary care settings | Different professions and medical specialties involved in care provision |
Many study participants expressed that they had not received sufficient information about the PHR before its introduction, adding to the difficulties of those first weeks. In fact, one physician who only works at the reception center on weekends did not know what the PHR was until he was recruited to participate in the interviews for its evaluation.
“The doctors had to get accustomed to writing in them [the PHRs], […] there was a bit of an adjustment period” (N3).
“Many of us [doctors] didn’t know that this personal health record exists at all or what it is for exactly and well maybe that’s also why it was difficult in the beginning” (D1).
It emerged from the interviews that working conditions in the reception centers were perceived to be a key barrier to the implementation of a patient-held PHR. Many participants, mainly physicians, described their work environment as stressful and intense. Some talked about tensions between staff and patients and a feeling of being left alone, without the necessary resources to do their job properly.
“Here I do not receive any support, […] and that’s why I don’t do it often because it can be simply fatal to have to do everything alone from 10 to 6 o’clock” (D9).
“We’re there for six, seven hours and get headaches figuratively speaking, headaches from [working with] the asylum seekers, headaches from the security personnel, headaches from the nurses that come in every time, and yes – headaches from the documentation” (D4).
In this context, the additional workload caused by the PHR was seen as a major obstacle to its implementation by many participating physicians. This was especially so where reception centers had a well-established electronic PHR in place. In these cases, introducing the patient-held PHR meant that the patient’s medical information had to be recorded on two systems, increasing the documentation workload and, in some cases, leading to confusion between the systems.
“I have to look at it again on [electronic health record], [...] because one colleague reports in here and the other documents in there and the third documents in both and the fourth does not have any time to document anything but there is a doctors’ note, that is often chaotic” (D6).
“You have to document everything, on the computer, for the institution itself, and now also for the PHR. It is a triple burden of paperwork.” (D4).
The burden of using the patient-held PHR appeared to be abetted in the presence of ancillary health workers, students or interns that were able to help out with the documentation.
“Whenever there are interns or students with us, or someone helps out, you can basically document simultaneously in the computer and the other [person] copies it straight from there into the booklet [...] that works, too” (D1).
The PHR routine
In all but one study site, the PHR was handed out to patients by a nurse or a doctor. In some cases, nurses prepared the booklet with the patient’s name and ID to expedite the process. In one reception center, the PHR was handed out and the first entries were made by the public health service that conducts the mandatory medical entry screening and provides vaccinations.
Handing out the PHR did not necessarily include explaining the purpose of the PHR to patients. None of the study reception centers had established standardized procedures regarding the briefing of patients about the PHR. In one case, the nurses believed that the doctors would inform patients and the doctors thought the opposite was the case, leaving patients with little or no knowledge about the PHR. The form and content of the explanation provided varied but often included highlighting the importance of the PHR for the provision of safe and continuous care.
“You just have to explain it differently, so that they understand it and the booklet [exists] so that you don’t get the wrong medication and die” (N2).
“We [doctors] tell them [asylum seekers] that they always have to take it with them. Yes, that it’s simply really important for the documentation and success of the therapy” (D7).
At most of the study sites, healthcare staff had put in place mechanisms enforcing patient adherence to the PHR. These often included rules regarding the treatment of patients who did not take their PHR with them to medical appointments. Most participants, doctors, and nurses, sent patients back to their accommodation to fetch the PHR before offering care. One doctor described that she gave the security men at her door a sample PHR and told them to check if the patients have theirs with them.
“We really tell them [asylum seekers] to go get it [PHR]. Yes yes, that is a little bit of an educational exercise” (N3).
“I really find it most sensible that no one treats a patient who doesn’t bring the booklet along” (D6).
Another participant described a different routine he observed at his reception center, where patients simply got a new PHR whenever they forgot to bring theirs along – a practice that was regarded as undermining the aim of the PHR to facilitate information transfer.
“What do the nurses do, well they give him [asylum seeker] a new one [...] but the refugees are not stupid either, why should I take it with me if I get a new one anyway” (D4).
Use and non-use of the personal health record
The physicians interviewed for this study agreed that they use the PHR to obtain information on a patient’s medical history. However, it was repeatedly pointed out that the relevance of the PHR within a consultation varied by patient and symptoms.
“[..] it depends, multimorbid, chronically sick [patients] [...] you would always look at it [PHR] [...] But very young patients, coming in with a common cold or back pain again and again, I don’t […] fully read everything that has been written in there.” (D1).
While expressing that the PHR was particularly important for complex chronic or oncologic conditions, some respondents noted that it was not suitable to carry enough information for the actual therapy and monitoring of these patients.
“Let’s assume that we have a patient with a long medical history, and next week he has to be treated by an external doctor. […]But then the information that is in the personal health record is too thin – to really [do] something well informed there” (D11).
Regarding the documentation of their own consultations, most participants said they record at least diagnoses and prescriptions as well as relevant test results such as blood pressure. Some physicians also recorded laboratory results, while others admitted forgetting to use the PHR altogether when under stress.
“In the health booklet I limit myself to diagnosis and therapy. Or maybe temperature, blood pressure et cetera whenever it would make sense [to include]” (D1).
“I do that [documentation] very briefly sometimes. A key word, “everything is okay”” (D2).
“[I use the PHR] if it is there and if I remember it I must confess” (D11).
The views regarding the use of the patient-held PHR by internal colleagues diverged substantively. Participants from two study sites said that they usually saw their colleagues’ notes in the PHR and believe that most of them did document their consultations regularly. At one study site, a participant was much more skeptical, describing that most of her colleagues did not use the patient-held PHR at all. In the remaining two reception centers under study, the uptake of the PHR among internal physicians was described as heterogeneous, with some documenting their consultations in the PHR on a regular basis or printing reports from the electronic health records and others being more inconsistent in its use. Also, some participants described not being able to read their colleagues’ handwritings in the PHR.
“The majority of my colleagues, I see that in the booklets […] they [doctors] all write in there” (D3).
“I check the health booklet to see what is written there, if there is something in there at all, often there is nothing.” (D11).
The existence of parallel health record systems appeared to interrupt the uptake of the PHR within the reception centers as physicians had to document their consultations and access information on all available systems. Some doctors solved this apparent conflict by documenting their consultations in the electronic personal health record only, printing the electronic record and storing it in the PHR’s document pocket.
“I’ve gotten into the habit of writing only the date in the health booklet by hand, today, the first of December, see computer print-out.[…] The previous print-out is shredded, and the current one is kept in there [document pocket in the PHR]. For me, that is the documentation in the health booklet” (D3).
Interviewed nurses mainly used the PHR for carrying out tasks based on the information contained in the PHR without consulting a doctor.
“Long term medication, blood pressure medication, diabetes medication, where you know he [patient] always needs these, and then we can [...] immediately order the medication, and he does not need to see the doctor” (N1).
“It can happen that people are scheduled for the next days or [...] once a week, and then we look in here [PHR] [...] and know that he will have his blood taken and we can do that without the patient having to see the doctor, and he only returns with his results” (N1).
In one reception center, nurses also used the PHR to communicate what they perceived as particularly relevant information about the patients through color codes. They used colored stickers on the cover of the PHR to indicate that a patient has an infectious disease, a mental health issue or is pregnant. If the patient received anticoagulation such as Marcumar®, the PHR in this facility was marked with an “M”. A nurse explained this procedure as follows:
“It always makes sense [...] to know beforehand what we are dealing with [...] Sometimes not all [psychiatric patients] take their medication, and we had a few patients who freaked out regularly [...] now there is always someone at the door who sees this booklet and says aha, mentally ill, I will call my colleague [security staff] for general safety” (N5).
The PHR’s use appeared to be a lot more irregular among external doctors. Where individual interviewees remembered having read PHR entries by external doctors, these were noted as singular incidents and often by doctors with whom a close collaboration had already been established.
“No hospital writes in here [PHR]. They have discharge letters. [...] and no external doctor writes anything in here” (D5).
“I have rarely seen that -maybe two or three times that an external doctor [...] wrote anything in the health booklet” (D1).
In many cases, the reception centers still received written reports from external doctors which were then stored in the patient-held PHR’s document pocket. In this sense, the PHR was used as a storage place for all relevant personal medical documents. Highlighting the relevance of this function, many participants suggested that in the future, the PHR should include an additional document pocket or the format be changed from a booklet to an actual folder.
“They [the patients] take from one of their pockets some medical report that they received [from a doctor] somewhere, and then I tell them that needs to go in here [PHR], the booklet is basically a file folder” (D3).
While a few interviewees reported negative experiences with the patients’ treatment of the PHR, most believed that the majority of asylum seekers had a positive attitude towards it.
“It is not that we get really horrible booklets, well sometimes it is worn out, but overall it is being treated fairly well” (N3).
“Some [...] treat it like a really important document, an ID so to speak, and [...] others, with them it looks awful, food stains everywhere, coffee stains, I don’t know what – so there are both extremes” (D1).
Benefits and limitations of the patient-held PHR
The perceived inconsistent utilization of the PHR, both by internal and external colleagues was reflected in the way participants assessed its benefits. During the interviews, participants discussed the benefits of the PHR both regarding actual, immediate changes in their work reality as well as hypothesized or potential advantages of the PHR for themselves, their colleagues and the patients once it would be implemented in daily routine. No participant doubted the general benefit of a PHR for the quality of care along the patients’ in-country journey.
“If this is really the plan […] that he [the patient] has a complete booklet, then for him simply the quality of care is improved” (N6).
“There is a point in the booklet if it is properly kept” (D4).
Impact on internal transfer of information: Fragmentation and interprofessional care
The extent to which the study participants perceived a concrete benefit of the PHR for the transfer of information between doctors within one reception center was significantly influenced by the availability and design of electronic health records prior to PHR implementation. In reception centers that did not have one electronic health record system accessible to all doctors working in its medical departments, the PHR was perceived as an essential tool for the internal transfer of medical history. In these settings, too, the PHR’s benefit was hampered by inconsistent utilization.
“No one can look into the other [electronic health record]. For this, the booklet is the most important contact point of all” (N1).
“We ensure with it [the PHR] the continuity of care for other colleagues and for ourselves, well, without that it does not work at all” (D2).
“Most of the time I read only my own handwriting […] that is why the help I get from this booklet is zero” (D5).
Participants from the reception centers that used one electronic health record system believed the patient-held PHR to be less beneficial to their internal communication.
“I am telling you honestly primarily important for the doctors here is the electronic health record” (D4).
“Before we had the computer, the booklet, for me personally it was more important than now […] the computer […] gives me all the data that I need if he [the patient] has been here before” (D8).
Another benefit that emerged from the interviews was that the patient-held PHR improves interprofessional communication between physicians and nurses. As nurses could utilize information in the PHR, they needed less time consulting the doctor. Instead, they could answer minor questions patients might have or hand out prescriptions based on the information contained in the PHR.
“This is the big benefit of this booklet for us, if everything is really in there, we can get the prescriptions ready, and the people don’t have to see the doctor twice” (N1).
Prior to PHR implementation, access to information about external consultations had been a significant problem. The benefit of a PHR in bringing documentation of external consultations back to the reception center was generally acknowledged. However, the aforementioned low uptake among external doctors means that it rarely contained information about external consultations.
“It [the PHR] is only interesting if something external is happening because you don’t always know about the external things. But as the self-employed colleagues don’t feel bound to this booklet anyway – I am not sure if it makes a lot of sense.” (D5).
Some interviewees speculated that even if external doctors did not document their consultation in the PHR, they might still have read and benefitted from information contained therein. A participant described that external doctors used to call to inquire about patients, saying that after the implementation of the patient-held PHR “this has been very very much reduced, maybe two three phone calls a week as opposed to many per day” (N2).
Surprisingly, one participant was not aware that external doctors were supposed to use the patient-held PHR at all.
Some participants saw the transmission of health-related information after the transfer of an asylum seeker to a subsequent accommodation as a key benefit of the PHR because electronic health records are not shared with other institutions.
“We want there to be something that isn’t lost by leaving the current environment because [electronic health records] are lost [...] so that the future doctor no matter where and however he will work, knows that he [the patient] was examined there” (D6).
An opportunity to examine the actual benefit of the PHR in the transfer of patients was offered by the interviews that were conducted at a reception center that had not introduced the PHR. Around one-third of their population had been transferred from reception centers which had implemented PHRs. These participants were very vocal about the benefits of the PHR for the medical care provided at their reception center.
“I am very certain, that it [the PHR] improves the continued care” (N6).
“The health booklet indeed helps us if they [the patients] have been to the doctor in the [previous] reception center and he writes his diagnosis in there or simply the medication. And then we look at that, and we say aha, so he must have been in treatment, or there is a diagnosis. […] So this is […] helpful as an additional communication tool” (D10).