These studies bring to light three fundamental impacts on health research:

1. In partnering with patients, research benefits from identifying unanswered questions, patient-relevant topics and new areas of research.
2. Patient-partnered research influences and shapes knowledge translation strategies and activities.
3. Established patient–researcher relationships provide impetus to continue collaborating.

In this special edition, the researchers successfully partnering with patients using co-creation, co-design and co-leadership, and we get a glimpse of the evolution of patient-partnered research. In one project, an empowered patient brought the grant opportunity forward; in another, the community saw the need.

Nadia and Rachel discuss their own experiences of FIcare, and of units where it has not yet been fully developed, and underline how the approach enables families to bond and supports better outcomes for premature babies. They also describe the power of social media in bringing parents together to understand and promote their role in their children's care while in hospital - as parents not visitors.

Care Opinion is a non-profit organisation with over 16 years of online feedback from patients. It is a platform for patients to share their experiences of UK health and care services, whether good or bad, and where Trusts and healthcare organisations can read and act upon this feedback. It is free for patients to use, and organisations can have two responders for free, or more if they subscribe.

Currently, Care Opinion hosts over 480K stories (many from nhs.uk, with which Care Opinion shares data), with 75% of the stories receiving a response. The site has 50K visitors a week with currently over 10,500 staff using it. All the content is moderated before posted to ensure staff identity and patient confidentiality is protected and the site is a safe place for everyone.

How are staff learning from and using this feedback to implement changes in their trust?

There was a mixed response from the PSMN members, with some not having heard of it or used it, and others whose Trusts regularly monitor and respond to the feedback.

James gave examples of some of the feedback received and how the Trust involved had used this feedback. One such example was from a parent sharing her experience of the special care neonatal unit her baby was in. Although she recognised the amazing work of the staff, she highlighted how it was disappointing when she arrived for a cuddle with her baby and find they smell like one of the nurses wearing very overpowering perfume! The staff involved responded, agreeing that sensory stimulation, including smell, is important for vulnerable babies and perfume was not an appropriate stimulation. This resulted in practice being changed and staff no longer wearing perfume.

Another example was feedback on Care Opinion from a lady whose husband had to go to A&E a couple of times a year due to an autoimmune condition but received different care and protocols, and faced differing levels of knowledge of his condition every time he came in. This led to one occasion when his medication was withheld despite him repeatedly asking to see a doctor to discuss. Following a meeting with the patient, the Trust made a number of changes, including placing a copy of the patient’s care plan on their A&E system and some of the staff attending a local training session on dealing with endocrine disorders, delivered by the patient’s consultant.

But how do staff feel about receiving feedback that may be negative?

Patient feedback is considered integral to quality improvement and patient safety. For staff it is an opportunity to see the system through the patient’s eyes. Although you may think online feedback is mostly negative, angry and demoralising, actually 70% of it is positive. [1]

“The team are loving the feedback and the ability to respond directly to service users!”

And when there is an issue, staff welcome the opportunity to respond to it and make changes and resolve issues before they become formal complaints.

“At times it also helps to actually reduce complaints. We can get in touch with a user straight away and we can avoid a lengthy complaint response.”

For the patient, the knowledge that their feedback has contributed to organisational learning and quality improvement and the feeling of patient empowerment should not be underestimated.

As one Care Opinion reviewer states: “I felt empowered and understood and believed and respected…which is all I ever needed in the first place”.

In summary, Care Opinion allows:

• trusts to get reports on individual issues
• the normalisation of real-time feedback and patient insight
• a positive effect on staff morale, confidence and pride
• data analysis at scale
• research with patients.

How do we ensure the feedback gets to the right people?

A question from the PSMN was how to get all staff involved if only one or two staff within the Trust read/receive the feedback from Care Opinion. It was agreed that feedback needs to be delivered to the department and to the staff that needs to see it to ensure a more meaningful response back and so if there is an issue they can learn and do something with it. If the feedback is positive, it will have a cultural impact on the team as it will increase pride and value of the staff involved. Staff will also get used to receiving feedback and feel less defensive about it. However, currently there is no data from Care Opinion to know whether feedback is being acted upon.

Even old stories can create learning opportunities

Another PSMN member asked why old unanswered feedback remained on the site (as after 3 years, a Trust can no longer reply). Unanswered feedback can demoralise patients and make them feel unvalued, and it also begs the question of what’s done with unanswered safety problems. James acknowledged that Care Opinion doesn’t have the power to do anything to ensure Trusts respond, but by keeping it on the site, even old stories can create change and learning opportunities, and can also be used for research purposes.

James concluded the session by discussing his vision for the future of Care Opinion. Currently all health boards in Scotland are using it and in Northern Ireland all trusts, blood transfusion units and ambulance services are using it with the hope that GPs will be next. In England it’s growing more slowly but with a good number of Trusts and organisations subscribed to it. Looking forward, how do we use the data and how do we learn from it? Ultimately it has to be a safe space, ensuring a respectful and thoughtful exchange between user and provider.

We’d love to hear from Trusts on how they are using patients’ feedback from Care Opinion. Please share in the comments field below.

For further information on Care Opinion, please contact info@careopinion.org.uk.

Patient Safety Learning supports the Patient Safety Management Network by hosting the community on the hub, helping organise the drop-ins and taking notes to capture insights for members of the Network. If you are a patient safety manager and would like to join the Patient Safety Management Network, please email claire@patientsafetylearning.org.

Further reading

• How can patients' voices be heard and acted upon when they attempt to report incidents of harm?
• Patient letter: improving care by using patient feedback (December 2019)
• GREATix: Improving culture, wellbeing and  patient safety through positive feedback
• We are missing the potential of patient feedback (March 2020)

Related reading

Whose Shoes: an exciting and innovative way for health and care staff to explore concerns, challenges and opportunities together

Whose Shoes: Keeping the conversations alive during the pandemic to build the future of health and social care

• Communicating potential harms and benefits: primary care version
• Communicating potential harms and benefits: obstetrics and gynaecology version
• Communicating potential harms and benefits: perioperative version
• Communicating potential harms and benefits: plastic surgery version
• Communicating potential harms and benefits: ophthalmology version
• Communicating potential harms and benefits: cancer genetics version

More information can be found on the PIF website, through the link below. 

Three years ago, my then 11-year-old son developed a slightly swollen eyelid. The first out of hours GP diagnosed an allergic reaction and prescribed anti-histamines; the second diagnosed an eye infection and prescribed drops. Within days, he was admitted to hospital, his face completely unrecognisable. 

On admission, I suggested that he had glandular fever. I had done that frowned upon thing that patients do; my own research. A Google search had led me to the conclusion that the most likely explanation was periorbital oedema, a less common clinical feature of infectious mononucliosis.[1]

Four consultants disagreed with me, as the classic triad of fever, pharyngitis, and lymphadenopathy were not present. In the early hours of one particular morning, the ward sister suggested I stay off Google. 

I cannot fault the level of patient care that my son received by the nursing staff. He was given IV amoxicillin and after a 5-day hospital stay, he was allowed to continue treatment from home as an outpatient. 

He soon developed a horrendous scarlet fever like rash and once again, I began desperately researching, as my child writhed on the floor in agony. It turns out (according to the collective intelligence of Google) you must not give amoxicillin to patients who test positive for Epstein Barr (EBV) - the virus that causes glandular fever. I drove him straight to the GP surgery, who requested that he be readmitted to paediatrics and tested for EBV. He tested positive.  

After another stint in hospital, followed by weeks of home treatment, the rash eventually calmed down, but it took a couple of years for his body to recover fully. He suffered from extreme fatigue, lost a lot of weight and was more susceptible to other viruses – a year later a chest infection put him back in hospital. He missed a lot of school, through prolonged absence followed by part-time attendance, and was unable to play sport - losing his place on the City youth football team. 

In the majority of cases, parents will be the greatest experts in their children’s health. They will have the greatest knowledge of their child’s symptoms and the greatest motivation to research potential explanations. 

My son’s example is one of many highlighting the risk involved in dismissing the parent’s voice. This is compounded by some clinicians having the arrogant assumption that they know all there is to know – creating a dangerous blind spot when it comes to keeping patients safe. 

Reference

1 Hasselt W, Schreuder R and Houwerzijl E. Periorbital oedema. The Netherlands Journal of Medicine 2009; 67(8).