Built on the principles from Figure 3, results are presented in two sections (figure 3). Themes that inform training programme design present findings from 4 a priory themes (figure 3) aligned to the Framework Method with inductive sub-themes [29]. The right section presents an additional 3 themes that inform implementation identified through inductive thematic analysis. Results of visual analogues are presented using ranked levels of interest from 1 not at all interested to 10 very interested.
Themes that inform training programme design
Using NVIVO, the research team investigated differences across professions and settings. No differences were found. Four of the themes correspond to the research questions (Fig 1. and Fig. 4). The iterative process of verifying themes strengthens credibility, whereby themes determined by researchers appropriately fit FG discussions [35].
Knowledge gap
One objective was to explore the assumption that frontline health care workers are not well informed about PM. This assumption was confirmed whereby participants (n=6) self-reported that they had not previously heard of PM, none had seen patients asking for genomic sequencing and none had seen patients that presented with a genetic data.
There’s a huge gap, I’m starting from nothing
All participants agreed and accepted the presented description and definition of PM (see section 2.1) with the proposed change of replacing ‘process’ with ‘approach’.
The practical application of genomic testing was discussed, e.g. when it was appropriate to do a genome sequence, how that information should be managed and shared with patients, raising questions on how best to translate genomic data to better patient outcomes. Results confirm our knowledge gap assumptions.
Learning
A comparison between the professions showed that there was high agreement on relevance of the presented learning objectives (Table 1: mean agreements between 9.75 and 6.25 of Scale 1 – 10 where 10 = extremely important to my profession). Further data was collected regarding the specific learning objectives within each of the presented topic areas (ref. supplementary materials). For the purpose of limitations of the study we have An additional subtheme on the type and form of training emerged reflecting expectations in practice. Doubt arose concerning the implications of bringing this topic into practice and the need to train in a topic that is not well defined. Given the nature of PM as an integrated approach to care, participants supported inter-professional training;
It would be an advantage to have a common training …as participants have to work together, so why not learn together… ….There might be a common foundation… …and we can address specific roles [general practitioners, pharmacist, applied practice nurse].
Flexible learning adaptable to different professions with different needs was found as a challenge. Our findings highlighted that every participant had different expectations and preferences, underlying the importance of a design that is adaptable to every learner.
Table 1. Perceived level of importance of PM learning objectives by professional role
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Rating scale 1 (not at all important to my profession) to 10 (extremely important to my profession)
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Nurses
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Pharmacists
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Physicians
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1] Use basic genetics knowledge and family history to integrate genomic risk into the health care plan$
|
9.75 ± 0.25
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6.75 ± 1.00
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8.00 ± 1.50
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2] Communicate and act on the possibilities, limitations and challenges of PM when integrated in the health care plan$
|
9.75 ± 0.25
|
8.00 ± 1.50
|
8.50 ± 1.25
|
3] Understand genomic sequencing information and consider/highlight its potential impact on health when counselling patients$
|
9.25 ± 0.50
|
8.25 ± 0.75
|
8.00 ± 1.25
|
4] Understand the relative contribution of behavioural, social, and environmental factors in health and disease and act on them to improve the health status of your patient$
|
9.75 ± 0.25
|
7.75 ± 1.50
|
8.25 ± 1.25
|
5] Understand and apply societal and legal implications of PM$
|
9.75 ± 0.25
|
8.00 ± 1.25
|
8.00 ± 1.25
|
6] Understand the clinical features and the therapeutic options associated with the most frequently encountered diseases of your specialty that are caused by genomic variants$
|
8.75 ± 0.75
|
9.50 ± 0.50
|
8.75 ± 0.75
|
7] Manage/coordinate care with PM services$
|
9.00 ± 0.50
|
8.00 ± 1.25
|
6.25 ± 1.15
|
$ Results are mean ± Standard error of the mean (SEM). N=12
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Potential
The patient scenarios triggered discussions on the practicalities of professional roles. Participants rated these scenarios resulting in high agreement of relevance within each profession (max 9.5, min 8.0). Limitations included a lack of vision on how to implement PM, lack of clarity on clinical outcomes for patients, and access to patient records.
‘So for the pharmacist scenario……we don’t have access to patients’ medical records and we are fighting for that, because that would increase the safety with which we dispense medication’.
Risks of implementing a PM approach that could potentially have a negative impact included big data, safe collection and storage of data, and the risk to patients.
At the level of accessibility of data …. We may end up with a massive amount of information and then we need to know how to interpret it….and make the right decisions.
Challenges were identified as a lack of time, lack of resources, how to share information, absence of a clear definition. Many of these challenges were repeatedly expressed throughout discussions.
We are actually overwhelmed with all the things we should do in this short consultation. 30 minutes is too short, it takes a whole hour for this kind of patient.
Strengths With a focus on improving practice performance and patient outcomes, participants discussed the potential of PM in patient care regarding new requests from patients and hospitals, promotion of better integration and inter-professionalism, early intervention and better patient management.
The professional organisation in which I am involved is generally favourable to progression towards PM and to the inclusion of PM in our logic. This organisational system would promote opening towards innovation in patient management.
Motivation
Although the current perceived importance of PM were ranked as low (indicated in average as 1), all professional groups indicated an increased importance of PM as well as increased level of interest in the future (between 4.5 and 8.2). A lack of readiness from insurance, patients and health systems were all identified as possible roadblocks to successful implementation.
Investigating the motivation in PM brings us to the centre of determining acceptance and appropriateness to a move towards a genome driven approach to patient care.
I would say …, that my degree of interest (for PM training) would depend ultimately to what extent PM enters into [clinical] guidelines.
Themes that inform implementation
The below themes are presented from the results of the thematic analysis (figure 4). These themes are organised within this section to support interventions to facilitate implementation.
Patients
The implementation of a more precision approach to patient care could not be successful without interest from patients.
If I didn’t have interest from patients..., I wouldn’t be interested.
Education in PM can equip patients to make life choices that may reduce risk of disease presentation.
It is not enough to have the right tool which gives the right intention, you have to help the person go in the right direction
An educated patient who is willing to have their genome sequenced and is open to discuss how to reduce and identify risks through lifestyle choices and preventive medication may benefit from an extended and healthy life. These discussions ventured towards the risks of a more precision approach to quality of life for patients.
We are battling against disease characteristics within the patient that will remain throughout their life and that we cannot eliminate…. We can only act against, act with or adopt behaviour that is more favourable, but we cannot eliminate the problem.
All participants agreed that this was a delicate balance that still left unanswered concerns.
Health Systems
The participants understand PM as a care approach that is integrated through professional networks that facilitate a patient’s care transition across healthcare settings.
The more inter-professional interaction there is, the better the integration….by managing as a network we integrate more.
Integrated care is dependent on inter-professional practice, availability of patient data across settings, and communication channels.
Around costs, two diverging perspectives emerged; the additional costs of genetic testing and support treatments and the delivery of more efficient medicine that may yield better patient outcomes. The potential of implementing an individualised approach will be restricted by current infrastructure, particularly with patient health insurance. In a number of scenarios PM requires support of many healthcare professionals.
If it leads to the consultation of a dietician [for example] if I look at today’s reality, the patient costs will not be covered.
Professionalism
The risks of implementing a more genome centred approach surfaced discussions on the need for clear guidance to safeguard patients. In this instance, the collection, storing and disseminating patient data, risk of quality of life to patients and safe decision making.
In the end is there not a risk of selecting individuals who deserve to be treated based on their genome? … [Precision Medicine]… should be implemented ethically and to the highest standards.
The movement of professional boundaries is evolving in current delivery of care to patients. Professional roles are not always clearly defined and sometimes dictated by legal restrictions rather than capabilities of professionals or what makes sense in practice.
The pharmacists are currently redefining their profession and the neighbourhood pharmacist is a gateway to the healthcare system.
Participants demonstrated a commitment to delivering the best care to patients through professional identity and ownership of tasks.
In inter-professional work there are two dimensions which are important. One is to work with the other person… the other is to fully understand one's own identity and be able to communicate it to others.