Research

The aim of this study is to understand how National Health Service (NHS) organisations in England can make best use of the immediacy, transparency and early warning capacities of online feedback that can be used in combination with other local qualitative and quantitative information on patients’ experiences.

Organisations often struggle to reach a decent response rate to questionnaire surveys on patient experience. However, there has been a huge increase in feedback and comment in online settings such as review and ratings sites which solicit such feedback, as well as unsolicited feedback in more general settings such as online social media, forums, and blogs. The challenge for NHS organisations is to know how to interpret these types of ‘feedback’ in relation to other sources of data on patient experience, and how to act on these combined resources to improve services.

This study has four objectives:

Objective 1: to identify the current practice, state of the art, and future challenges for online patient feedback, and to determine the implications for the NHS.

We will review existing literature and undertake an extensive consultation with experts and national and local stakeholders (patients, practitioners, commissioners, policymakers) and engage them in implementing our findings.

Objective 2: to understand what online feedback from patients represents and who is excluded, with what consequences.

We will undertake a questionnaire survey of the public, and qualitative interviews with patients and carers, to investigate why and how people choose to (or do not) provide online feedback on health services, how they expect their feedback to be used by the NHS and other patients and to identify who are the users and non-users of internet content.

Objective 3: to understand the potential barriers and facilitators to the use of online patient feedback by NHS staff and organisations and the organisational capacity required to combine, interpret and act upon patient experience data.

We will use questionnaires, focus groups, and in-depth case studies to assess the knowledge, attitudes and behaviours of NHS staff and organisations towards the different sources of patient experience data (online feedback, locally collected quantitative and qualitative data).

Objective 4: to develop a toolkit and training resources for NHS organisations (providers and commissioners)
We will use study findings to develop the toolkit and training resources to encourage appropriate use of online feedback (social media and ratings sites) in combination with other patients’ experience data.

To address the 4 objectives, the programme comprises 5 inter-linked projects:

1. A stakeholder/expert consultation and scoping literature review which aims to find out what is known about online feedback from patients.

2. A face-to-face household survey of the general public to find out who gives online feedback and who uses it.

3. Interviews with patients and carers to explore the motivations and actions of people who choose to create or use online feedback.

4. Surveys and focus groups with healthcare professionals to understand practice, attitudes and use of online feedback.

5. In-depth case studies with 4 NHS Trusts to gain a deeper understanding of how and why online patient feedback is currently viewed and used (or not) by NHS staff and NHS organisations and commissioners.

Please find further information on the study here.

Project 1 – Stakeholder consultation and evidence synthesis (scoping review) regarding use of online feedback in health care

Project 1: (Objective 1) Stakeholder consultation and evidence synthesis (scoping review) regarding use of online feedback in health care.

Aim:
– Establish current practice and ‘state-of-the-art’ in this field;
– Provide a horizon scan of future developments;
– Identify what online patient feedback service initiatives and research projects are currently underway or planned;
– Understand what lessons can be learned from previous work.

Method:
– Consultation with experts in the field of online patient feedback and patient experience of NHS services;
– Engagement with patients, practitioners, policymakers, and local commissioners;
– Scoping review of the literature.

 

The fieldwork has now finished. Links to the findings will be provided as soon as we are able.

Project 2 – Survey of the public

Project 2: (Objective 2a) Survey of the public

Aim: obtain the first representative UK population data on the use of online comment on health services that allows examination of equity and inclusion issues.

Method: face-to-face household survey of a large number of people in the UK.

 

The fieldwork has now finished. Links to the findings will be provided as soon as we are able.

Project 3 – Qualitative study of patients’ and carers’ experiences of creating and using online comment

Interviews with patients and carers to explore the motivations and actions of people who choose to create or use online feedback.

We would like to find out more about how and why patients and members of the public have used the internet to express their views about healthcare, or read other people’s comments. We are interested in people’s use of a range of internet platforms e.g. Twitter, YouTube, blogs, health forums, patient feedback websites and NHS complaints forums.
In this part of the study we aim to conduct interviews with people, lasting about an hour, where they can talk to us about what motivates them to use online platforms to comment on, or give feedback about, their health service experiences.
The lead researcher for this work is Susan Kirkpatrick. If you would like more information, or would like to take part please contact her on susan.kirkpatrick@phc.ox.ac.uk


Interviewing patients and the public who have used the internet to express their views about healthcare, or have read other people’s comments

As a researcher working in the Health Experiences Research Group in Oxford I have interviewed many people about their health experiences, for the health information website susan-kirkpatrick-photowww.healthtalk.org. Over the years it’s become common for people to describe ways in which they have sought support and information about health conditions or treatment or found it helpful to share experiences with others online.

Sharing personal experiences on Facebook or Twitter, or through blogs or videos, is becoming a familiar part of everyday life. These days people regularly use the internet to look at customer reviews and ratings of holidays and shopping purchases, and are commonly asked to give their own reviews. Increasingly, people are going online to give feedback on their experience of the health services, or to read the comments or ratings that other people have provided. There are websites that invite feedback on doctors or hospitals, and some people choose to tell their stories, including about health services, in personal blogs or discussion forums.

For this part of the study we want to find out more about how and why people share their views and personal experiences of healthcare services online. I will be travelling around the UK to interview people about how they have used the internet in this way. I want to ensure that I talk to a wide range of people, and that the interviews include people who have shared both good and bad aspects of health services.

I also hope to speak to people who have not used the internet for this purpose, perhaps there are particular reasons that they don’t wish to do so, or they might consider doing so in the future. The things that people tell me during the interviews will be used to develop resources for NHS trusts which may help them interpret and use online comments and feedback from patients and the public, and potentially to improve services.

 

The fieldwork has now finished. Links to the findings will be provided as soon as we are able.

Project 4 – Survey and focus groups of healthcare professionals

Project 4: (Objective 3) Survey and focus groups of healthcare professionals.

Aim: obtain an understanding of awareness and attitudes of health professionals in relation to online sources of patient feedback (either specific to their own practice, or more generally).

Method: surveys and focus groups with NHS professionals

 

The fieldwork has now finished. Links to the findings will be provided as soon as we are able.

Project 5 – In-depth organisational case studies

Project 5: (Objective 3) In-depth organisational case studies.

Aim:
– Gain a deep understanding of how and why online patient feedback is currently viewed and used (or not) by NHS staff and NHS organisations and commissioners;
– Analyse how online feedback relates to other sources of data on patient experiences;
– Know how to use this knowledge to improve NHS care.

Method: in-depth case ethnographic studies with NHS secondary care provider organisations and their local related organisations (secondary care focus as majority of online feedback is on secondary care). While this in-depth case study approach necessarily means a small sample (due to being resource intensive), we will aim for diversity of organisational size and current level of performance.

 

The fieldwork has now finished. Links to the findings will be provided as soon as we are able.

Patient and Public Involvement

Research Design
In designing this project we have consulted widely with the NHS and worked collaboratively with patients and carers, and we will continue to do so throughout the proposed work.

Four engagement activities took place:
1. We held a stakeholder engagement event with patient groups and professional bodies. Participants agreed that the project ‘gives patients a voice’. They wanted us to have practical benefit and not just be ‘academic’.

2. We conducted a series of one-to-one meetings with volunteer members of public, for them to comment on the proposed research questions and priorities.

3. We attended local patient and public involvement events, to find lay patient and public involvement collaborators who bring specific personal and professional skills. One of these is now a co-investigator on the programme; the second was unable to continue involvement due to other commitments.

4. Together with our lay patient and public involvement collaborators, we co-designed and co-facilitated two workshops for members of the public to comment on the application. Feedback by email was obtained from people who expressed interest but were unable to attend. In particular, participants wanted clearer objectives and clearer communication.

PPI during the research programme
Anya de Iongh is a co-investigator on the programme. She is a regular blogger (thepatientpatient2011.blogspot.co.uk) and tweets (@anyadei) about her experiences as a patient and patient leader. She will have a lead role with our dissemination and social media activity.

Douglas Findlay is the lay member of our Study Steering Committee. He also chairs our Patients, Carers and Public Reference Group through which we will engage with patients and patient organisations.

Both have wide experience in patient and public involvement (PPI) with third sector organisations and with the National Institute for Health Research and an interest in quality improvement.

Patients, Carers and Public Reference Group (PCPRG)
The Patients, Carers and Public Reference Group will work with us on refining research design, interpreting findings and disseminating results. The groups will meet every six months, and attend our annual INQUIRE workshop, to discuss findings of the research. Patients, Carers and Public Reference Group members will also be involved in the interim via email and telephone/webinar.