The research potential of Patient Opinion

Patient Opinion is not in itself an academic or research-focused enterprise. Our mission is to carry patient and carer voices into the heart of the health and care system in ways which are effective in improving care and changing culture.

But despite that, Patient Opinion offers three, or maybe four, interesting possibilities to researchers:

• We provide an open, online, searchable repository of patient and carer experiences across the UK
• As an innovative intervention to “crowdsource” improvement in a major public service, Patient Opinion’s activity and impact is open to multiple research questions
• As a platform for patient feedback, Patient Opinion can be used to gather experiences of patients or research participants

We are reluctant ourselves to undertake research within Patient Opinion because:

• We lack the necessary skills and resources
• We lack the necessary impartiality

But we bump into interesting questions – which could easily become research projects – every week. So we are keen to encourage and support research conducted with or on Patient Opinion, as our limited resources allow.

Patient Opinion as a data source for patient experience

Over 110,000 stories are available at patientopinion.org.uk, representing a significant public repository of patient and carer experience. About half of these stories were posted via Patient Opinion and are shared subject to a Creative Commons licence. The remainder are aggregated from NHS Choices and are shared subject to the Open Government Licence. Thus, in effect all feedback on Patient Opinion is freely available for non-commercial research purposes.

Our data is searchable in multiple ways, for example: by time, author type, service, location, specialty, condition, impact and criticality. Data can be accessed via an API (i.e. by machine) or exported using reporting tools.

Data from Patient Opinion has been used in studies of patient experience in cancer care, older people’s care and a regional emergency and urgent care system.

Patient Opinion as an intervention

Patient Opinion is an intervention in the health/care system, with a range of effects. As an intervention or activity, Patient Opinion depends upon multiple actors, including for example patients and carers, staff in healthcare providers, commissioners and regulators, policymakers, and indeed the Patient Opinion team itself.

Some years ago Patient Opinion itself was the subject of a study by the University of Birmingham, and of a PhD at the University of Oxford. And there are many researchable questions related to our activity. For example:

• Why do people post their feedback in public? How does posting on Patient Opinion compare with making a formal complaint, from a patient perspective? What forms of value do people want or receive from posting or reading public feedback?
• How are services responding to feedback online? How helpful do patients find responses? What makes a response more or less helpful? How do staff communication empathy online?
• How do staff view public online feedback? How and where are organisations using online feedback to improve services? What systems are in place for using patient feedback?
• What implicit theories and values motivate the Patient Opinion team? How is moderation undertaken? What “emotional labour” is entailed in online feedback, by authors, moderators and staff responders?

Patient Opinion as an informal data collection platform

Patient Opinion is not a formal system for collecting research data. It is clearly subject to various biases in terms of who will use it, and what people will say in public.

Nonetheless, for some projects it may be a good fit. Because feedback is public and may be responded to by providers, commissioners and others, encouraging people to feedback via Patient Opinion is itself an intervention.

Currently, for example, Sheffield CCG is using Patient Opinion to collect experiences of respiratory care in Sheffield. Posted stories are sent to providers in real-time, support the CCGs public engagement agenda, and are used by the CCG to inform commissioning strategy.

Patient Opinion as a feedback platform for research participants

Patient Opinion’s feedback platform could also potentially be used as a way of hearing from research participants, and posting responses. To date, nobody has used our platform in this way, but we are happy to explore the possibility.

Find out more

If you would like to find out more about research with or into Patient Opinion, feel free to get in touch.