Imagine a scenario where someone rings their bank to ask about a direct debit and the possibility of changing their payment. Sounds reasonable and appropriate in the modern world?
Now consider the same person querying a detail in a letter from a secondary care provider concerning their hypothyroidism, speaking to an administrator in hospital near you for example. Is it likely that they will receive a similar level of experience in accessing the right person to deal with their query, the timeliness of response, the accuracy of the information held and the possibility of changing this information?
Why is there such a gap in our experiences between these two scenarios? Whether it is financial or clinical data, should we expect a similar approach to security, to accuracy and crucially to the concept of ownership?
Sharing information with patients
Why is there a lack of democratisation when it comes to healthcare records? Are we worried about the technical language used in our notes? Possibly.
Are we concerned about sharing third-party information, which might be contained in the narrative? Are we worried about the nature of some of the information in some patient records and the impact it may have on some patients? Yes, again this might be relevant for a minority of individuals.
Or, is there something else at play here? If people can be trusted with the complexity of their tax returns and bank statements, surely, we can trust them with the information held in their medical records?
This aspect of sharing patient information has exercised me for some years now. I was a partner in a practice, which was one of the first to offer a copy of the letter when a patient was referred to secondary care.1,2
I felt that this was important and allowed patients to understand the reason for the referral and the question that I was asking on their behalf, about the next steps in their plan of management. Interestingly, it became clear that not everyone wanted or needed a copy of their letter, the reason being that they trusted me and knew that I had told them everything they needed to know about the referral and what to expect next.
Involving patients in their care
This approach led me to consider where else I could involve patients in their own care so as to increase their sense of ownership of their health problems and, perhaps by extension, to find out if this led to better outcomes for them.
I thought about the way we treat people with type 1 diabetes and people with hypertension. Both have long-term conditions and are on medication. However, we trust people on insulin to titrate their medication according to their glucose level but ask people with hypertension to attend for frequent blood pressure checks so that we change their antihypertensive medication.
This thinking me to create an educational programme and flow-chart for self-monitoring and self-management of blood pressure for patients newly diagnosed with hypertension.
Over the course of a year we involved 18 patients, all of whom found benefit in the programme and were happy with the concept. They liked the idea of being ‘in charge’ of their illness and were pleased that they could check-in with the nurse when appropriate (usually quarterly) rather than monthly time off work for a GP appointment. Blood pressure control was optimal for most of the group at the end of the year.
This of course, is not a randomised controlled trial and is more anecdote than data, but it does align with the evidence-base on patient involvement and the concepts of shared decision-making and the benefits associated with this approach.
Evidence for shared decision-making
Looking at the published data on shared decision-making and outcomes we can see that much of it is focussed on the softer end of benefits, such as affective-cognitive gains (confidence in the doctor, back to ‘trust’ again), or behavioural advantages (adherence to medication regimes) rather than hard end-points such as lives saved, or strokes avoided.3,4
Having said this, which of us would not want increased trust or patient’s more ‘onside’ with our medical model of care on a day to day basis? Particularly when there is also a suggestion that doctors who consult using the shared decision-making approach are less likely to be on the receiving end of complaints and litigation.5,6
The evidence suggests that a patient who has a doctor who works to share decisions will be motivated to ‘own’ their condition, is more likely to trust their doctor, listen to the therapeutic options and to make higher-quality decisions. To me, this sounds like a recipe for more involved patients, with fewer errors and complaints and the possibility of better clinical outcomes.
Whether this will ever translate into the smooth patient information experiences of online banking remains to be seen.
- Dr Morrow is medical director of Clarity Informatics and clinical non-executive director of the North East Ambulance Service. He was a GP for 20 years.
- Morrow G Do patients want copies of referral letters? Br J Gen Pract 2003 Jul; 53(492): 563. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1314651/
- Morrow G, Robson A, Harrington B, Haining S. A qualitative study to investigate why patients accept or decline a copy of their referral letter from their GP. Br J Gen Pract 2005 Aug; 55(517):626-9. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1463244/
- Aubree Shay L, Elston Lafata J. Where is the evidence? A systematic review of shared decision making and patient outcomes. Medical Decision Making October 28, 2014. Available from: https://doi.org/10.1177/0272989X14551638
- Joseph- Williams N et al. Implementing shared decision making in the NHS: lessons from the MAGIC programme. BMJ 2017; 357: j1744. Available from: https://www.bmj.com/content/357/bmj.j1744
- Durand MA, et al. Can shared decision-making reduce medical malpractice litigation? A systematic review. BMC Health Serv Res. 2015 Apr 18;15:167. doi: 10.1186/s12913-015-0823-2. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25927953
- Schoenfeld E et al. The effect of shared decision-making on patients’ likelihood of filing a complaint or lawsuit: a simulation study. Ann Emerg Med 2019 Jan 3. pii: S0196-0644(18)31466-5. Available from: https://doi.org/10.1016/j.annemergmed.2018.11.017