Background
Person Centred coordinated care
Measuring person Centred coordinated care
How PRMs are used to inform healthcare
Rationale for this study
Methods
Study design
Data collection
Primary data collection
Secondary data collection
Cumulative data set
Practitioner/Non-practitioner | Female/Male | Location | |
---|---|---|---|
Primary data set | Practitioner = 6 | Males n = 6 | UK n = 12 |
Non- practitioner n = 8 | Female n = 8 | Other n = 2 | |
Total participants | n = 14 | ||
Secondary data set | Practitioner n = 12 | Males n = 3 | UK n = 12 |
Non-practitioner n = 0 | Female n = 9 | Other n = 0 | |
Total participants | n = 12 | ||
Cumulative data set | Practitioner n = 18 | Males n = 10 | UK n = 24 |
Non-practitioner n = 8 | Female n = 16 | Other n = 2 | |
Total participants | n = 26 |
Interview methods
Analysis
P3C Domains X is used to highlight P3C components that themes were not mapped onto (were not reported as being enhanced through PRM use). | |||||||
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Information and communication (Dataset: primary and secondary) n = 12 | My goals/outcomes (Dataset: primary and secondary) n = 10 | Decision-making (Dataset: primary) n = 1 | Care planning (Dataset: primary) n = 10 | Transitions n = 0 | |||
Components of P3C | Consistency of contact, P3C behaviours and skills | Goal setting/outcomes | Support for Shared decision making | Co-created plan of care | X | Continuity of care (regular appointment and follow up) | |
Information gathering and sharing | Empowerment/Activation | Key worker, coordinator | |||||
Knowledge of person and familiarity | Self-management | Responsive and appropriate contact | |||||
X | Involvement of carers | Coordination of care/support within and across teams | |||||
Medication (in this case treatment) review/plan |
Results
P3C Domains | ||
---|---|---|
Information and communication | My goals/outcomes | Care planning |
1a) Facilitating the presentation of symptom change and current status “Some people find it really helpful to do the [PAM] and the [WEMWBS] because it gives them a tool for focusing their questions and how they’re feeling”. | 2a) Self-management: PRMs can help practitioners identify issues and areas for improvement “[The PAM] highlights areas they may think they are confident about, but in reality they’re not. If completed with conversation [you can] set goals to improve”. |
4a) Supporting health practitioners to provide tailored care
“They have identified through this huge [PROM] database what is a really good treatment for this type of patient”. “There was discussion about whether or not long-term conditions should include Dementia… We [said] you need to add that as a separate consideration [as it will involve] a completely different kind of tailored support and we want to be able to know what that looks like”. |
1b) Enriched practitioner - patient conversations “It helps the patient to identify things about their disease and about their health that may not surface otherwise if you don’t ask these questions”. “We ask patients to do the Warwick and then right in front of us we can see a bit about how the patients feeling and lift a conversation out of that and say how does it make you feel to see what you’ve written down”. “It’s very good for building up relationships actually, I know we moan about the paperwork, but sometimes you can get to know different sides to the person. It does make them more open to talking I think sometimes”. |
2b) Empowerment
encouraging patient engagement in their care through PRMs
“As a diary – print them off put them into a folder… linking to it through their phone”. “[PRM data] can improve their understanding of their disease and what we’re trying to measure … because this is an area that we think is important and should be important to you”. “When they’re reporting and they seem to be getting better, but [their results show] they’re not, you can begin to work with the difference between the two”. |
4b) PRMs enabling ongoing monitoring of patients’ condition and progress with treatment
“So we could have a threshold for a change, for example. So if you, you know, move by two points or one point or whatever, actually that then flags that on to another dashboard that says, this patient…and we can then run a telephone clinic potentially”. |
1c) Creating communication pathways between healthcare services and patients; creating a more person-focused service “We were able to say, look this is what patients actually want. This is where we’re not scoring so well, that we don’t provide access in that practice. So, they then turned around and said, okay we will fund”. | 2c) “Headway made with personal goals Let’s focus on a goal instead, let’s focus on you running the marathon each year and let’s see what we can do about that. So, let’s use the PROM and the PREM about this to see how things [get on]”. | 4c) Using PRMs to keep care plans current and relevant “It was more useful for the clinical changes to drive the frequency of outcome measures. So, we use a measure called Phase of Illness, which captures the context of the current illness; whether somebody is stable, unstable, deteriorating, or dying”. |
1d) Generating pre-consultation communication “Physicians can see [before the visit] okay, there are some things here that we need to take care of and can identify things about their disease”. |
4d) PRMs enabling remote management of stable patients
“We’ve got cohorts of patients that we know are quite stable; they’re highly educated. They understand what’s required of them. Why do we need to see these patients in clinic or as frequently as we have been? Patients that aren’t terribly engaged, struggle with education and understanding around conditions - surely they’re the ones that we should be concentrating the resources and education on”. |
P3C domain: Information and communication theme 1a) facilitating the presentation of symptom change and current status (practitioner and non-practitioner participant data)
Theme 1b) enriched practitioner - patient conversations (practitioner data)
Theme1c) creating communication pathways between healthcare services and patients; creating a more person-focused service (practitioner and non-practitioner participant data)
Theme 1d) generating pre-consultation communication (practitioner and non-practitioner participant data)
P3C domain: My goals/outcomes theme 2a) self-management: PRMs can help practitioners identify issues and areas for improvement (practitioner and-non-practitioner participant data)
Theme 2b) empowerment: Encouraging patient engagement in their care through PRMs (practitioner participant data)
Theme 2c) tracking progress made with personal goals (non-practitioner participant data)
P3C domain: Shared decision making (practitioner/researcher participant data)
P3C domain: Care planning
Theme 4a) supporting health practitioners to provide tailored care (practitioner and non-practitioner participant data)
Theme 4b) enabling ongoing monitoring of patients’ condition and progress with treatment (practitioner participant data)
Theme 4c) keeping care plans current and relevant (practitioner/researcher paticipant data)
Theme 4d) enabling remote management of stable patients (practitioner participant data)
P3C domain: Transitions
Barriers and facilitators to practitioners using PRMs to enhance P3C
Barrier | Examples | Facilitators | |
---|---|---|---|
People based | Clinicians’ lack skills for using PRMs | Lack of clarity about the purpose and value of PRMs will fail to motivate patients to complete it and professionals to champion it. Lack of understanding and/or training on how to apply the measure in clinical settings. Requiring the skill to use the measures, whist maintaining rapport with the patient. | Provision of training to practitioners on why PRMs are important e.g., how it fits into P3C theory, how it can be delivered and used in practice to improve service delivery. Showing the patient the findings on the computer screen, while discussing them during consultations. |
Imposed work burden on staff | Staff can view measurement systems as extra and unnecessary work. Health professionals are too overwhelmed by existing workloads, so it would be better if they were not responsible for patients completing measures. | Offering a financial incentive. Using a champion from the same healthcare service to encourage use of the measure. Reducing the burden of the new workflow by training specific staff members to handle the measurement system. Facilitating a smooth integration of the PRM data into a health organisation’s electronic record system, so that accessing it is less burdensome and so that the information integrates with what data is already being collected. | |
Emotional burden on staff | Staff resistance to delivering the measures and hearing results, due to a fear of the unknown e.g. what feedback they may receive about their work. | Focusing on the change and improvement that can be made because of the information retrieved from the measure, rather than on what has gone wrong. | |
Burden on patients | “Culture shock for patients” – patients are not used to being asked to do ‘homework’ outside of the consultation; being involved in the consultation or being asked new, difficult questions. Patients not motivated to complete the measure as view it as only being useful for the health professional. Completing measures can be time consuming and burdensome. If many measures are given to the patient, they may develop questionnaire fatigue, especially if not thanked or told why the results are important. Technology - if the delivery of the measure becomes electronic then it can introduce a new workflow for the patients (as well as staff). Interface of the electronic version of the measure may not be user friendly. | Making patients aware of improvements to patient care that were made in response PRM data. Ensuring that someone asks the patient to complete the measure, rather than just having it lying around. Monitoring how many questionnaires individual patients are receiving. Picking measures that are relevant to the patient and adding to the collection slowly. Using one measure that can give patients the opportunity to talk about everything, not just certain conditions or issues. Providing different delivery formats, so that the completion of the PRMs is as easy as possible and the offer of support if patients are making a switch to electronic methods. Improving technology, so that patient access is improved. Using external software agencies for IT support and for sharing patient feedback on the website. | |
PRM based | PRM design | Lengthy questionnaires can interfere with patient-practitioner conversation. It will also make completion even less likely for people who already find it difficult to fill them in. Questions can be hard to understand and/or to respond to for some patient groups due to question design or because of their condition. Translations needed for different languages and for linguistic variations between different English speaking countries. Insensitive question design can have a detrimental impact on the respondent. Family involvement and perspectives not often sought with PRMs. | Working with the developers to make the items are relevant and fitting with your population group. Making decisions on whether people are able to respond to PRMs despite the impact of their condition(s) (e.g. cognitive impairments) on a case-by-case basis. Using proxy measures rather than excluding people who are unable to self-report Triangulating results from patients, health care practitioners, carers and with standard responses from people with the same condition. Using PRMs that use lay language. Using measures that have translated versions available. Making sure that the questions asked are in their local language and are asked by someone that they trust. Using measures that use positively framed items such as the WEMWBS. |
PRMs not providing an accurate measurement of outcome/behaviour/experience | Practitioners find that PAM results often jar with what they have learnt from interacting with patients. Consequently, they doubt whether the measure provides a true representation of how activated someone is. Patients giving answers that they think the practitioner wants or feel nervous about complaining. | Using peer advocates who can advise on how to complete the measures and encourage honest responses. Keeping participants responses anonymous so that respondent bias can be minimised. However, this makes collating data with other sources difficult. Training staff to interpret patient behaviours to combat discrepancies between proxy and self-report measures. Examining variables influencing agreement/disagreement between a proxy and a patient score. Once discrepancies are identified, scores can be adjusted and controlled for. | |
Access and interpretation | Maintaining patient contact | Can be difficult to feedback to patients who just disappear. | |
Maintaining access to data. | Data given to Clinical Commissioning Groups for aggregate measurements, but data not returned for practice level use. | ||
PRMs data difficult to interpret | Findings presented in overly statistical form to people without the skills to interpret them. | Giving a simple overview of the data, showing trends that indicate what might and might not be a good direction to go in. Giving different options for how to make changes in care. Including graphical representations of data and a decision support system. Keeping it simple – limiting the number of questions you use, so you know what good will look like. If the answer options are related to outcomes that are important to patients, the results will be easier to evaluate and will be valued. | |
Lack of feedback systems | If a patient accesses their results without an explanation, it can cause confusion and worry. |