Working with older patients and their family members to make sense of qualitative data on safe medicines management: insights from the RESI-Med study
By Giorgia Previdoli, Research Fellow
We need to make medicines management safer
Medicines help people to live longer, even when they are living with multiple long-term conditions. If not well-managed and monitored, however, medicines can potentially cause harm.
According to the National Health Service (NHS) in England a third of the population takes eight or more medicines by the age of 80. It is not just the number of medicines that makes life complicated and increases the risk of harm for patients. Some older people, for example, are expected to remember to take different medicines several times a day, manage visits and tests with different specialists, take regular measures and readings (e.g. blood sugar) and dynamically adapt their medicines doses to the results. Researchers and clinicians use the words “regimen complexity” to describe examples like this. And research shows that as things get complicated, mistakes become more likely. In addition, if medicines are not periodically reviewed, patients may experience inappropriate polypharmacy, which means that they are taking medicines that are no longer needed because they may not be providing benefits, or that may, in combination with other medicines, put them at risk of an adverse drug reaction. Research has shown that older people are particularly at risk, especially if they take many different medicines and have a complex regimen. For example, older patients are more likely to spend time in hospital and experience more serious complications if something goes wrong with their medicines.
According to the World Health Organization (WHO), unsafe practices and errors with medicines cost £38billon each year and is a leading cause of injury and avoidable harm. In the UK only, the estimated cost for medicines errors was £237.4. In 2017, WHO launched a global campaign to raise awareness of the scale of medicines-related harm and make medicines management safer. This year, “Medication without harm” was the theme chosen to mark World Patient Safety Day on the 17 September.
The RESI-Med study and the involvement of patients and family members in data analysis
Researchers at the National Institute of Health Research (NIHR) Yorkshire and Humber Patient Safety Translational Research Centre are addressing these challenges in the RESI-Med project. RESI-Med is a two-year study funded by NIHR and aims to develop an intervention to make medicines self-management safer for older patients who manage many medicines at home.
The RESI-Med study has 3 main steps:
- Step 1
- Patient interview study (32 people aged 65 or older)
- Staff interview study (16 healthcare professionals)
- Review of interventions to improve medicines management for older adult
- Step 2
- Co-design of solutions using the Experienced Based Co-Design (EBCD) toolkit by Point of Care.
- EBCD brings patients and staff together to explore new ways to improve healthcare.
- Step 3
- 2 focus groups with patients
- 2 focus groups with staff
- Prototyping to make our intervention ready to be tested in the real world
In addition to a multidisciplinary team of pharmacists and social researchers, the study team includes a patient with lived experience of managing many medicines in older age as well as a group of older patients and family members of patients who advise the team. In the RESI-Med study patient involvement has played a key role in every stage.
The study team also worked with older patient representatives and family members to make sense of the data collected during interviews with patients. Interviewed patients were very open about their struggles taking and manging medicines and the creative solutions they adopt to cope. To fully understand their reflections, we involved our Patient Advisory Group in the early stages to support our interpretation.
We chose to analyse the interviews using thematic analysis, an approach widely used across social sciences.
Patient involvement in healthcare research is becoming more and more common, but patient involvement in data analysis is still relatively unusual. Dr Catherine Powell, who is part of the RESI-Med team, recently involved a group of heart patients as co-analysists in a process evaluation.
While I was still familiarising myself with the data (the transcripts from the 32 interviews with patients), I studied notes made by and codes suggestions received from our Patient Advisory Group. I found this experience extremely insightful because they revealed aspects that had not captured my attention until that point, especially around the burden and the emotional impact of having to fit many medicines into everyday life. The writing up of the findings is still in progress but the influence of the Patient Advisory Group on the way the themes are taking shape is already clear. I am very grateful for that.
Reflections on the data analysis experience
Six people took part in the data analysis workshop and in the subsequent activities. Their feedback on how they found working on interview transcripts was very positive. I have interviewed one of the Patient Advisory Group members about her experience and this is what she told me. You can read the answers below or, if you prefer, you can watch our more informal chat in this short video.
Link to chat: https://youtu.be/xeiRaHEnzEo
Giorgia: Jan, why did you decide to get involved in this study?
Jan: I have cared for both my parents in their later years when they were taking multiple medications. This brings many challenges and complications and I wanted to be involved in trying to create and develop an intervention to help patients and carers to manage this safely.
Giorgia: Tell me more about your previous experience in other studies?
Jan: I have supported several research studies as a public contributor. My experience has been both good and bad, rewarding and at times challenging and disappointing.
Giorgia: How was your involvement in RESI-Med compared to other studies?
In what respect RESI-Med is different from what you have done before?
Jan: Resi-Med has been different because of the deeply personal connection to the subject and the emotional memories that have come back to the surface in discussions. The PPI group have been very involved from the start and views respected and taken into the development of the study. There was more detailed PPI involvement than other studies I have been involved with.
Giorgia: How was the Thematic Analysis workshop for you? Was it challenging? Did you enjoy it?
Jan: Taking part in the workshop and doing some thematic analysis was a challenge but a rewarding one. It felt that it gave the PPI group an empathy with the patients and the researchers in reading the questions and answers given. It was similar to what I expected in respect of trying to find themes in the text. It was different in that I found the responses from patients were raw and real and some showed real resilience in coping with the challenges/shortcomings in their healthcare. I found this quite emotional.
The support from the researcher and the rest of the PPI group was a great help and the experience of doing this task made me much more aware of real front line research.
Giorgia: Would you do it again?
Jan: Yes I would most definitely do it again as I feel I now have more experience to share in looking for patterns in the transcripts and it is a very rewarding and challenging experience. For any public contributors it may be helpful to read a section of a transcript prior to a workshop. They are actual conversations with exact representation of any general chat and pauses and this makes it a challenge to find the important points to include in your notes and initial codes.
Giorgia: What differences do you think it would make to qualitative data analysis in health research if there was more PPI involvement?
Jan: PPI involvement gives another perspective to the researchers in their analysis. The public will use their personal experiences as patients, carers and users of healthcare services to make sense of the data and are not bound by a structure of research strategies and constraints. I feel researchers and PPI groups together will give a fuller more real and rounded picture of patients’ experiences.
Giorgia: What was the best thing you learned from looking at the transcripts?
Jan: The best thing was seeing the real resilience of elderly patients coping with their health and their strength and sense of humour in adversities.
Giorgia: What are the key aspects that make PPI involvement in thematic analysis easier and more productive for the researchers and the PPI group?
Jan: I think the key aspects are the support of researchers and the respect of all views expressed both in the transcripts and in the way people code. This allows all views to be captured.