Person-Centred Care

Person-Centred Care

The research grouped in this area focuses on the valuation of patient experiences and eliciting preferences for the delivery of healthcare. This work applies stated preference methods in the support of person-centred healthcare.

Current Projects

Exploring remote working practices for patient public involvement and engagement in health and social care research – responding to COVID-19 and rising health inequalities

Patient public involvement and engagement (PPIE) in research can lay the groundwork for improving health care and services for all. This is especially the case for disadvantaged groups. The study has been prompted by the shift to remote, non-face-to-face, forms of working in PPIE brought on by Covid-19 prevention measures. Shielding and social distancing have changed the ways of involving the public in research (such as face-to-face meetings and events). This is a mixed-methods study with: surveys, qualitative interviews, and a discrete choice experiment. We will produce an analysis of how remote working in PPIE is affected by socio-economic and health inequalities, make recommendations for improving practice and develop training packages. We will recruit public contributors involved in research projects across the UK: the NIHR, charities, universities and other research organisations and people involved professionally with PPIE. The findings will help us address the inequities of remote PPIE and inform policies that ensure everyone is able to have their say in research.

HERU researchers involved in this research project: Verity Watson and Luis Loría-Rebolledo

External collaborators: Frith, L., Gabbay, M. (University of Liverpool); Watson, V. (HERU), Hassan, S. (University of Liverpool); Porroche-Escudero, A. (Lancaster University)

Improving the patient-pharmacist interaction: a new approach to help patients make informed decisions

As the patient-facing roles of pharmacists increase in practice, pharmacists need to develop effective consultation skills. This includes a patient-centred approach and shared decision making (SDM). For effective SDM, patients should be well-informed about options, evaluate the benefits versus risks and integrate these with their values. The discrete choice experiment (DCE) is a tool which structures a decision problem into an attribute-based framework and asks individuals to value options in a series of choices, highlighting the concept of trade-offs inherent in healthcare decisions. They have been used extensively to value patient experiences in healthcare, including pharmacy services. The mechanism underlying a DCE gives it a potential role as a decision aid tool (DAT).

This study will be conducted in three phases:

Phase 1 - literature review and qualitative interviews with patients, pharmacists and doctors to confirm what is important in the delivery of chronic pain treatment, and inform the DAT development.

Phase 2 - development and pre-testing of the DAT. The DAT will include multimedia information about chronic pain and a personalised-DCE component programmed to provide real-time feedback. 

Phase 3 – a pilot randomised trial will assess the acceptability of the DAT, recruitment and retention rates, and patient satisfaction with the pharmacist-patient interaction, and test outcome measures.

HERU researchers involved in this research project: Mandy Ryan, Terry Porteous and Luis Loría

External collaborators: C. Bond (Centre for Academic Primary Care, University of Aberdeen); R. Adam, P. Murchie (Institute of Applied Health Sciences, University of Aberdeen); and N. Krucien (Evidera)


Lives and livelihoods: understanding public preferences and trade-offs for government responses during a pandemic

Public health responses to the COVID-19 pandemic have impacted on people's physical and mental health, and have also had, sometimes profound, economic consequences. Public health responses must then balance protecting the population and healthcare system with the impact on the economy and personal freedoms. A better understanding of public preferences and how they differ across communities may help policy makers decide which interventions to deploy. We will use a DCE survey to elicit the relative importance of different attributes of public health responses to pandemics, and the trade-offs individuals are willing to make between these attributes.

The attributes include the type and the duration of the lockdown, the impact on the health service, the number of infections and excess deaths, the impact on household spending and job losses. We will also test if respondents’ preferences differ based on moral attitudes, demography, socioeconomic circumstances, health status, country of residence, or experience of COVID-19. We aim to collect preference data using an online survey of 4000 individuals from across the four UK countries (1000 per country).

HERU researchers involved in this research project: Mesfin Genie, Luis Loría-Rebolledo, Mandy Ryan, Ruben Sakowsky and Verity Watson

External collaborators: Shantini Paranjothy and Daniel Powell (University of Aberdeen)


Metastatic prostate cancer men’s Attitude towards Treatment of the local Tumour and metastasis Evaluative Research (MATTER)

Systemic therapy has increased overall survival in men with hormone-sensitive metastatic prostate cancer.  Novel local cytoreductive treatments and metastasis directed therapy are being evaluated, these can confer additional harm, but might improve survival. We aim to elicit men’s preferences for and willingness to accept trade-offs between potential improved survival and cytoreductive treatment risks using a discrete choice experiment.

HERU researchers involved in this research project: Verity Watson

External collaborators: Connor, M. and Ahmed, H. (Imperial College London)


Optimising Remote Consulting and Home Assessment of medically vulnerable Rural patients During unscheduled and planned primary care – assessing feasibility of the ORCHARD Intervention

This project assesses the feasibility of providing medically vulnerable rural patients with Medical-Self-Assessment-Boxes containing equipment to use at home during telephone and video consultations (telemedicine) with GPs and other healthcare professionals. 

COVID-19 has caused an upsurge in primary care telemedicine which we believe can be sustained and optimized to make things better for medically vulnerable rural patients beyond the pandemic. The Medical-Self-Assessment-Box will help equip these patients to self-measure and report key clinical measurements (e.g. blood pressure, temperature, oxygen levels) during telemedicine consultations. The project assesses practical issues around issuing and using Medical-Self-Assessment-Boxes, and methods of measuring effectiveness. A further aim is to inform a funding proposal to evaluate Medical-Self-Assessment-Boxes for medically vulnerable rural patients in the whole of the UK.

HERU researchers involved in this research project: Mandy Ryan

Co-Applicants: P. Murchie - Principal Investigator, R. Adam (Academic Primary Care, University of Aberdeen); G. MacLennan (Centre for Healthcare Randomised Trials, Health Services Research Unit (HSRU), University of Aberdeen); D. Dixon (Health Psychology, University of Aberdeen); J. Cooper (Emergency Medicine, NHS Grampian); R. Finlayson (Inverurie Medical Group); K. Gillies (HSRU, University of Aberdeen)

Predicting hesitancy and uptake for COVID-19 vaccination in France and Scotland

The Covid-19 pandemic and health policy response suggests that mitigation strategies including tiered restrictions will be in place until herd immunity is reached, i.e. above two-thirds of the population is immune against SARS-CoV-2. However, mitigation strategies aim to reduce viral transmission and therefore slow the build-up of natural immunity from infections in the population. Therefore, herd immunity may only be achieved by mass vaccination against SARS-CoV-2 infection. 

We use a discrete choice experiment (DCE) survey to assess population preferences for a range of attributes that differentiate possible vaccines. We estimate the relative importance of different aspects vaccines, and the trade-offs people are willing to make between these. We will specify a model of vaccine uptake that accounts for and models the determinants of vaccine hesitancy.

HERU researchers involved in this research project: Verity Watson

External collaborators: Schwarzinger, M. (University of Bordeaux); Luchini, S. (Aix-Marseille University); Watson, V. (HERU); Alla, F. (University of Bordeaux); Arwidson, P. (Santé Publique France)


Putting men's preferences at the centre of the doctor-patient relationship: the Prostate cancer treatment preferences (PARTNER) test

Prostate cancer (PCa) affects 1 in 10 men and is the most common cancer amongst men in UK. Usually men with localised PCa can choose between several treatment options, such as active surveillance, radiation therapy, or surgery. Different treatments are associated with different risks and types of side effects including urinary incontinence, bowel function, and erectile dysfunction. There is no overall best treatment for localised PCa in terms of cancer control. Therefore, treatment choice should depend on men’s views about the different harms and benefits of each treatment. This means men face a difficult decision that will affect their quality of life.

This project will develop a new tool that can easily be used by both men and health care professionals, which will improve communication by identifying men’s preferences for PCa treatment. The tool will achieve two goals: (i) to help men identify what matters most to them by asking them to think about the PCa treatment in a simple, structured way; (ii) to communicate information about men’s preferences to consultants.

HERU researchers involved in this research project: Verity Watson

External collaborators: Krucien, N. (Evidera); MacLennan, S., MacLennan, S.J., N’Dow, J. (Institute of Health Sciences, University of Aberdeen); and Ahmed, H. (Imperial College London)

Should Scotland provide whole genomic sequencing for diagnosis of rare disorders? A health economic analysis

Taken together, rare disorders are common and affect 6-8% of the Scottish population. Most are severe and life-threatening with a profound impact upon the quality of life and wellbeing of the individual and their family. The typical journey to diagnosis, or ‘diagnostic odyssey’, can take many years, with numerous hospital visits, costly and invasive tests, several misdiagnoses, and shattered hopes and expectations; many families never receive a diagnosis. As 80% of rare disorders have a genetic origin, increasing access to genetic diagnosis is a key component of UK and Scottish Rare Disease policy. Standard genetic testing is limited to examination of DNA from single gene variants to smaller gene panels (typically <100 genes) and is triggered by specialist clinical suspicion. More recently, comprehensive sequence analysis of a person’s entire DNA (Whole Genome Sequencing/WGS) or all the protein coding parts of their DNA (Whole Exome Sequencing/WES) increases diagnostic yield (% of cases receiving a positive diagnosis) and is expected to enable quicker diagnosis.

Potential benefits to patients and families of comprehensive sequence analysis include improved diagnostic yield, reduced length and scope of the diagnostic odyssey, reduced need for clinical attendance and investigative tests, and information for family planning and clinical management. However, little is known about how patients and families value such aspects of comprehensive DNA sequencing. The financial implications are also unclear.

This study will address the evidence gap around the benefits to service users (patients and families) and assess the resource implications of different genomic testing pathways.

HERU researchers involved in this research project: Mandy Ryan, Lynda McKenzie, Rodolfo Hernández and Michael Abbott

External collaborators: Z. Miedzybrodzka, L. Mennie, C. Clark (Medical Genetics, University of Aberdeen) and S. Heidenreich (Evidera)


Supporting shared decision making in early and advanced breast cancer: what matters to patients in an era of personalised care

Patients face information overload when considering the balance of risks and benefits from the wide variety of treatment options for early and advanced breast cancer. Clinical teams need help to understand what matters most to patients if they are to help them navigate these difficult choices.

The Breast Cancer Institute is funding an 18-month project to investigate preferences for breast cancer treatment. Using the discrete choice experiment (DCE) methodology, this project aims to better understand which side effects are important to individuals when balanced against potential clinical benefits.

The project will work with local patients and the clinical team to develop an online survey that seeks to measure the preferences of patients, clinicians and the general public for benefits versus specific risks. The analysis will help understand how such preferences vary between individuals and will unpick the disparity between the perceptions of the clinical team and the reality of patient wishes.

The results will be available as a basis for the development of improved shared decision-making processes, patient information or decision aids. The attributes and levels for the DCE will be informed by recent Public and Clinical Engagement (PACE) statements during the assessment of new medicines by the Scottish Medicines Consortium.

HERU researchers involved in this research project: Mandy Ryan 

External collaborators: P. Hall (Edinburgh Cancer Research Centre, University of Edinburgh); E. Gray (University of Edinburgh) and S-M. O’Hare (Edinburgh Breast Unit)


Valuing baby boxes: what’s important to parents

The introduction of baby boxes is a Scottish policy that is unique within the UK. The policy aims to improve health outcomes for babies and provide practical support for new parents in Scotland. A Scottish Government commissioned pilot evaluation notes that rigorous longer-term studies of impact are required. Developing appropriate outcome measures for these longer-term studies is necessary.

While the importance of ‘hard’ health outcomes such as infant mortality and morbidity is clear, wider societal benefits and cultural changes to parenting may also be important. A review of safe sleep interventions found some evidence that providing cheap cribs, along with information about safe sleeping, is associated with reduced sudden infant deaths and increased parental knowledge. However, there has been very little research into the wider social and cultural impact of baby boxes. Such information is crucial for future evaluations.

Our work will explore what factors should be considered in future evaluations of baby box programmes. We will conduct analysis of both media coverage of the introduction of baby boxes within Scotland and online parental discussion forums. In addition, we will carry out a series of focus groups with women attending mother and baby groups within the NHS Grampian area. We will purposively sample a diverse group to ensure we include the views of women from different socio-economic backgrounds, educational level, geographical contexts and age groups.

As well as providing invaluable information for future evaluations of baby box programmes, and public health interventions more generally, the research will also consider the role of media coverage and online discussion forums (in addition to the more commonly used focus groups) to inform the development of valuation in economic evaluation models.

HERU researchers involved in this research project: Mandy Ryan

External collaborators: Z. Skea, L. Locock (Health Services Research Unit, University of Aberdeen); H. Morgan (Institute of Applied Health Sciences, University of Aberdeen); M. Black (Aberdeen Women's Centre, University of Aberdeen).


PhD: An economic evaluation of genomic sequencing for the diagnosis of rare conditions in Scotland

Rare conditions affect 6-8% of the Scottish population. Most are severe and life-threatening, with a profound impact on quality of life for affected individuals and families. The typical journey to diagnosis, referred to as the ‘diagnostic odyssey,’ can take many years, with numerous hospital visits, costly and invasive tests, missed diagnoses, and shattered hopes and expectations. Novel developments in genetic diagnostics, namely whole exome sequencing (WES) and whole genome sequencing (WGS) may increase diagnostic yield, while also reducing the length and scope of the diagnostic odyssey. However, the financial implications of these genomic innovations are unclear. Health economic evidence is urgently needed to inform NHS Scotland policy on the reimbursement of genome-wide sequencing.

This research aims to conduct a comprehensive economic evaluation of WGS and WES, compared to standard genetic testing for the diagnosis of rare conditions in Scotland. In addition to detailed costing work, the benefits of genome-wide sequencing will be assessed using two Discrete Choice Experiments (DCEs). These DCEs will elicit preferences in separate samples of patients and families with undiagnosed rare conditions, and the Scottish general public. The perspective adopted on the measurement and valuation of health outcomes is an important normative and methodological consideration, which may ultimately impact estimates of cost-effectiveness. This multi-perspective approach will therefore elicit public and patient preferences for genomic medicine, and assess the impact of each perspective on NHS Scotland funding decisions.

PhD Student: Michael Abbott

Supervisors: Mandy Ryan and Rodolfo Hernández

PhD: Public and patient preferences for social prescribing

Social prescribing is a means to enable healthcare professionals to refer patients to the voluntary, community and social enterprise sector. Patients are referred to a link worker and together they co-design a non-clinical ‘social prescription’ to improve the patient’s health and wellbeing. Social prescribing is new and varied, and its value for money to the NHS and acceptability to patients and the public is unknown:

Social prescribing is only worthwhile if patients value the outcomes it provides. Patients’ preferences for social prescribing may depend on the health condition it is prescribed for. Knowledge about the variation in patient preferences can identify those who most value social prescribing. Furthermore, the public acceptability and willingness to pay for social prescribing is unknown. Variation in the willingness to pay across health conditions would undermine the ideal of equal care for equal need and have implications for the use of public preferences for decision making. To address these issues, the thesis will be split into three questions and discrete choice experiment methods will be used to answer these:

  1. Do patients’ preferences for social prescribing differ across mental and physical health conditions?
  2. Do public preferences for social prescribing differ across health conditions?
  3. Do public and patient preferences for social prescribing differ?

PhD student: Mélanie Antunes

Supervisors: Marjon van der Pol, Verity Watson (HERU); R. Norman and S. Robinson (Curtin University).


PhD: Using existing data to incorporate broader measures of benefit in economic evaluation

This is a PhD research project. The research is being carried out across themes. For a description of the project refer to the page on the Assessment of Technologies theme page - Using existing data to incorporate broader measures of benefit in economic evaluation

PhD student: Emma Tassie

Supervisors: Verity WatsonGraham Scotland (HERU) and Stirling Bryan (University of British Columbia)

Recently Completed Projects

Evaluating patient preferences for treating localised prostate cancer

An evaluation of patient preferences for the treatment of localised prostate cancer

Men with localised prostate cancer have to choose between active surveillance and radical therapy, which can entail a variety of treatment options from radiotherapy to surgery or minimally invasive interventions. This study applies a discrete choice experiment to elicit men’s preferences for, and trade-offs between, the attributes of pre-treatment evaluation, treatment and post-treatment follow-up for several available treatments. The study also investigates how subjects’ characteristics affect their treatment preference.

Outcome and Translation

The available treatments have minimal differences in terms of mortality. This study added to the evidence about how men with localised prostate cancer trade-off the differences between the treatment process and side effects.

HERU researchers involved in this research project: Verity Watson, Divine Ikenwilo and Nicolas Krucien

External collaborators: Hashim Ahmed and Mark Emberton (UCL)


Applying discrete choice experiments in pharmacy: applied and methodological issues. MRC/ESRC Postdoctoral Fellowship

MRC/ESRC Postdoctoral Fellowship. Applying discrete choice experiments in pharmacy: applied and methodological issues

This postdoctoral fellowship funded the development of peer-reviewed papers from the PhD, as well as the development of research skills in three areas: development of DCEs; their application to pharmacy, and their impact on economic evaluations in healthcare. A key focus was the evaluation of pharmacy, taking account of the patient experience and the incorporation of patient experience with an economic evaluation framework.

Outcome and Translation

Findings have implications for DCE practitioners generally – when incorporating a DCE into an economic evaluation a number of questions are raised: what factors should be valued, whose values (trial-groups vs. all–trial-population) and when should they be elicited (still-receiving-the-intervention or afterwards). Consideration should also be given to status quo bias.

Student: Michaela Tinelli

Supervisors: Mandy Ryan (HERU); Christine Bond (Academic Primary Care, University of Aberdeen).


A discrete choice experiment to value the personalisation of support for self-management of chronic pain

The context was the support people receive for self-management, firstly for chronic pain, then in a replication study, for chronic lung disease. The DCE included four attributes: information (‘relevant to you’ vs. ‘the same for everyone’); communication style (‘friendly and personal’ vs. ‘neutral professional’); situation relevance (‘makes suggestions which fit your situation’ vs. ‘takes little account of your situation’); and what matters in life (‘works with you on what you want to get from life’ vs. ‘seems to think everyone wants to get the same from life’). A cost attribute was included so that willingness to pay (WTP) could be estimated.

We recruited participants from an online panel: 517 with self-reported chronic pain and 200 with breathlessness. Participants revealed positive valuations for increased personalisation of all four attributes. Greater personalisation on the attributes relating to situation relevance (WTP £15.51) and what matters in life (WTP £14.10) were valued most highly; tailored information was valued less (WTP £10.86) and more friendly communication valued least (WTP £3.46). The replication study in breathlessness showed similar results. We also found heterogeneity in valuation, particularly around the relative value of tailored information.

Outcome and Translation 

Our results should lead healthcare providers to rethink how we make support for self-management properly person-centred. Person-centred healthcare must emphasise the substance of personalisation and not just the style.

HERU researchers involved in this research project: Mandy Ryan and Nicolas Krucien.

External collaborators: C Burton, T Porteous, A Elliott (Centre of Academic Primary Care, University of Aberdeen) and V Entwistle (HSRU, University of Aberdeen)

This project is funded by The Health Foundation Inspiring Improvement programme.


Improving the public health sector in South Africa: eliciting public preferences using a discrete choice experiment

The proposed introduction of a national health insurance (NHI) scheme in South Africa is the most important issue currently on the health policy agenda in that country, with implications for the whole health system. The scheme aims to achieve universal health coverage. To date there has been little opportunity for public engagement in the development of health policy around this scheme. This study aimed to better understand the community’s preferences in relation to key aspects of healthcare services when selecting healthcare providers, in order to identify priority areas for reform in the supply of public healthcare. It used a discrete choice experiment to elicit public preferences of the community in the Western and Eastern Cape.

Outcome and Translation

Communities are prepared to tolerate public sector health service characteristics such as a long waiting time, poor staff attitudes and lack of direct access to doctors if they receive the medicine they need, a thorough examination and a clear explanation of the diagnosis and prescribed treatment from health professionals. These findings prioritise issues that the South African government must address in order to meet their commitment to improve public sector health-care service provision.

HERU researchers involved in this research project: Mandy Ryan

External collaborators: A Honda, D McIntyre (Health Economics Unit, University of Cape Town, South Africa) and R Van Nierkerk (Rhodes University)


Patients preferences for treatment of lower urinary tract symptoms: a discrete choice experiment

In this study, we used a mixed methods approach to establish men’s preferences for different lower urinary-tract symptoms (LUTS)/benign prostatic hyperplasia (BPH) treatment characteristics, the impact of LUTS and LUTS treatment on their quality of life, and the trade-offs men are prepared to make between treatment characteristics and quality of life. Our mixed methods approach combined online focus groups and a DCE. The mixed methods approach provided a rich data set that can be used to explore preferences for treatment of LUTS/BPH.

Outcome and Translation

We find LUTS have a large impact on many aspects of men’s quality of life. Many men were reluctant to take medication in general. However, men value treatment that improves day-time frequency of urination, night-time frequency, and urgency of urination. A medicine targeting a mix of symptoms, with a particular focus on improving urgency combining either reducing night-time frequency or substantially reducing day-time frequency, is likely to have the highest benefit for patients.

HERU researchers involved in this research project: Divine Ikenwilo, Mandy Ryan, Verity Watson and Sebastian Heidenreich


Person-centred care

Many healthcare services around the world aim to deliver person-centred care. In order that care is and can be responsive to the needs of people we need to be able to measure what people want from their healthcare. We have undertaken research into the delivery of person-centred care and developed economic methods for eliciting population and patient preferences. Scotland’s Chief Medical Officer’s annual report on ‘realistic medicine’ calls for healthcare that focuses on outcomes that patients value and defines waste as interventions that do not add value for patients. Our research is important here.

Outcome and Translation

Research in MBV has developed and refined a set of techniques that allow us to understand service users’ preferences. Our research has measured and valued people experiences of services across the care pathway including self-management, primary care, and secondary care and across a range of conditions from minor ailments, care for chronic conditions and acute care. Our research allows us to better understand what people want from care and what they value about care. This information can be used to develop a service that provides person centred care. 

HERU researchers involved in this research project: Verity Watson, Mandy Ryan and Luis Loría


Public attitudes towards drug misuse and drug treatment strategies

Research evidence is strong for opiate replacement treatment (ORT), and current policy is moving from harm reduction to rehabilitation. However, public opinion (attitudes) can be at odds with evidence. This study explored the relationships between attitudes, knowledge of drugs and a range of socio-demographic variables that potentially influence attitude. Values were elicited using willingness to pay (WTP).

The response rate was 38.1% (1,067/2,803). Less than 10% had personal experience of drug misuse but 16.7% had experience of drug misuse via a friend/acquaintance. Regression modelling revealed more positive attitudes towards drug users in those with personal experience of drug misuse, (p < 0.001), better knowledge of drugs (p = 0.001) and higher income (those earning >£50,000 per annum compared to <£15K; p = 0.01). Over half of respondents were not willing to pay anything for drug treatment, indicating they did not value these treatments. Respondents were willing to pay most for community rehabilitation and least for methadone maintenance treatment. Qualitative analysis of open responses indicated strong negative attitudes, doubts over the efficacy of methadone and consideration of addiction as self-inflicted. There was ambivalence with respondents weighing up negative feelings towards treatment against societal benefit.

Outcome and Translation

There is a gap between public attitudes and evidence regarding drug treatment. Findings suggest a way forward might be to develop and evaluate treatment that integrates ORT with a community rehabilitative approach. Evaluation of public engagement/education to improve knowledge of drug treatment effectiveness is recommended.

HERU researchers involved in this research project: Mandy Ryan

External collaborators: C Bond, M Jaffrey and C Mathieson (Academic Primary Care, University of Aberdeen)


Valuing comprehensive genome sequencing to improve diagnosis of rare disorders: a health economic perspective

In the single-centre micro-costing exercise, mean costs of clinical evaluation, local laboratory processing, variant interpretation, result reporting and data storage were around £6,924 per family trio for WGS, compared to £2,452 for trio-based WES. Median costs for standard laboratory testing (including tests performed within and outside Scotland) were £1,478 per singleton patient with intellectual disability and £1,997 per patient with other phenotypes. We are in the process of validating our costings in the three other Scottish genetics centres.

The EQ5D-3L is the current UK standard for assessing the value of health care intervention. However, concern has been raised about its applicability to DNA sequencing due to its focus on health outcomes, thus ignoring wider benefits which have been recognised as important.

To understand the EQ5D-3L’s ability to assess the patients’ and families’ valuation of WGS, we interviewed six parents of affected children and three adults with a rare condition. Although the negative effect on wellbeing of the diagnostic odyssey is well documented, participants reported perfect health on all dimensions of EQ5D-3L (mobility, self-care, usual activities, pain/discomfort and anxiety/depression). Thus, any change in wellbeing attributable to WGS would not be detected using EQ-5D. While the chance of obtaining a diagnosis was valued, other important factors include: length of time to get results; secondary findings; health-related information for other family members; and contribution to future research from having the test.

Using the economic instrument of willingness to pay, which provides a monetary measure of value, respondents were willing to pay between £200 and £2000 for WGS. Our results support the need to go beyond diagnostic yield and EQ-5D when valuing WGS, and to more appropriately assess the user perspective.

This project on will be the focus of our future research.

Outcome and Translation

A key outcome of this project was to develop a grant application to the Scottish Government to take this work forward, conducting a cost-effectiveness and cost-benefit analysis of WGS in Scotland. 

HERU researchers involved in this research project: Mandy Ryan, Lynda McKenzie, Blanca Moran and Sebastian Heidenreich (Honorary HERU and Evidera)

External Collaborators: Professor Zofia Miedzybrodzka and Dr Lynne Mennie (Medical Genetics, University of Aberdeen)


What health care experiences matter to patients and how can we assign value to them for policy making purposes?

Healthcare policy leaders internationally recognise that people’s experiences of healthcare delivery are important, and invest significant resources to monitor and improve these. However, the value of particular aspects of these experiences – relative to each other and to other healthcare outcomes – is unclear.

This project considered how economic techniques have been and might be used to generate quantitative estimates of the value of experiences of healthcare delivery.

The project first developed a conceptual map of patients’ experiences. The map reflected insights from the capabilities approach. We conducted a systematic review of applications of economic techniques to healthcare delivery. We found that these techniques have been quite widely used to estimate the value of standardised features of healthcare systems and processes (e.g. of care delivery by a nurse rather than a doctor, or of a consultation of 10 minutes rather than 15 minutes), but not to estimate the value of the (potentially diverse) implications of these for patients’ experienced capabilities. To inform future research relating to the valuation of experiences of healthcare delivery, we organised a workshop for key stakeholders.

Participants undertook and discussed ‘exercises’ that explored the use of different economic techniques with capabilities-based descriptions of experiences of healthcare delivery. The workshop identified a number of methodological issues that need careful attention, and highlighted some important concerns about the ways in which quantitative estimates of value might be used in relation to aspects of healthcare delivery. However, it confirmed enthusiasm for efforts to attend to experiences of capability associated with healthcare delivery.

Outcome and Translation

It is hoped this research will provide an impetus for bodies such as NICE, and those involved in evaluation studies such as RCTs, to broaden their measure of value in line with what matters to patients in the provision of healthcare.

HERU researchers involved in this research project: Mandy Ryan, Philip Kinghorn

External collaborators: V Entwistle, J Francis and C Fraser (HSRU, University of Aberdeen)


PhD: The gift of time: how do I use it and how should I use it?

There is extensive evidence on the relationship between a cancer diagnosis and labour market outcomes. However, there is limited evidence on the relationship between a cancer diagnosis and non-labour market outcomes, such as household work and leisure. Understanding time allocation on daily activities may imply the recovery journey post a cancer diagnosis.

The PhD explored the ‘trajectories’ of time allocation following a breast cancer diagnosis; the causal impact of time allocation on wellbeing among women diagnosed with a breast cancer; and preferences of time allocation, and the monetary value of time on non-labour market activities, such as household work, leisure and sleeping.
The PhD was part of the Aberdeen Curtin Alliance, combining the strengths of two of the world’s leading Universities.

PhD Student: Ni Gao

Supervisors: Mandy Ryan (HERU); R. Norman, S. Robinson (Curtin University, Western Australia) and N. Krucian (Evidera)