The interim report on the evaluation of the web and telephone delivered patient decision support interventions introduced over the last year makes some interesting reading. Glynn Elwyn, a leading expert on shared decision making and colleagues from Cardiff looked at the uptake and initial responses to patient decision aids in 3 areas: osteoarthritis of the knee, localised prostate cancer and benign prostatic hyperplasia.
They found that it was relatively easy to recruit patients to use the web-based decision support tools and there was a very high willingness to access these kind of resources but once patients had logged into the systems there was significant attrition. As with other websites most of the drop-out seemed to be due to technical problems, difficulties with the log in system and initially with a high data collection burden before patients had been given chance to access the information that they were logging in to see. These technical barriers are perhaps to be expected . Everyone reading this blog will be aware of the frustrations of trying to navigate over-complicated websites. Simplicity is they key. The selected group that were able to navigate the system made very positive comments about the approach and there was a high degree of satisfaction People were particularly enthusiastic about the content and layout, maybe that is a reflection of the poor quality of a lot of patient information leaflets and educational material ? They were delighted to know that the information had been validated by experts and that it was accessible in clear language. The ability to produce a summary page was also valued and many patients were looking forward to using these summaries with their clinicians. But read on …. that wasn’t what the clinicians were looking forward to!
"The specialist leads the assessment process. The referral letters and X-rays are assessed at least weekly, marked up and given to the referral clerk on the unit to send an appointment letter and, if the specialists deems it appropriate, this is accompanied by the standard NHS Direct letter inviting the patient to visit the website and telephone help line. A record of those invited to visit the websites is kept by the lead nurse. No process has been set up to follow-up or encourage the use of the decision support website. The lead nurse plans to check to see what summaries are available from patients referred to the website.
The nurses and unit manager seemed very committed to the idea of involving patients in decision making. However, the specialist was less supportive of the idea that patients could become involved in decision making, despite his role on the national steering group for the development of the decision support website. However, he recognised that there is a problem around the choice of knee replacement and cites evidence that over 20% of patients are dissatisfied with surgical outcomes, mainly because they have inappropriate expectations of significant improvement in function rather than pain relief. The nurses at this site were however clearer that the website would help because it gives patients access to impartial, balanced information. The nurses and unit manager are committed to shared decision making but the specialist is less committed when asked directly. Nevertheless, the specialist does approve of better informed patients as he believes that greater degrees of informed choice will improve satisfaction rates but that even so, this would make little difference in operation uptake rates.
There was some confusion about how summary pages would be used. The specialist was anxious to establish that he would not want to have to use them in his clinic. He did not want to make use of the patient‟s knowledge, their knee 22 score, the degree to which they were ready to make a decision and their personal preferences as documented in such a summary. The nurses seemed bemused by this as they thought this was a central objective of the project. The nurses suggested that they would ensure that the summary pages would be put in the notes and, if possible, attention drawn to them as the specialist and the patient interact. This reaction raises an important point about expectations. If the patient has completed the work involved in producing a summary page and an Oxford Knee Score they will likely become better informed and probably more confident about asking questions. In addition, they will likely expect that the specialist will know and acknowledge that they have accessed the site and that he or she would be interested in their view, in their choices and in their rationale for that choice. If the specialist does not acknowledge this process they will miss an opportunity to engage the patient and also risk alienating them. We know from a patient interview from this hospital that the patient expects to discuss the results of her use of the website and for this to be central to the consultation. This potential mismatch of expectations points to the difficulty of engaging clinical staff in the concept of shared decision making, supported by the use of tools such as patient directed websites."
The report identified a large divergence of expectations between the patients and clinicians. The doctors and nurses were in the main enthusiastic about the concept of referring patients to decision support websites but there was much less understanding of shared decision making. The idea that patients wish to become well informed in order to participate in decisions is surprisingly not widely understood or accepted. Despite the patients’ enthusiasm, many of the specialists stated they would not be interested in the individualised summary pages produced by the websites for the patients if they were presented back to them in clinic. This seemed to be more than just a matter of time. Its an early finding and clinician buy-in might change as health care professionals get more used to patient participation.
In summary, the patients are enthusiastic about the approach, some technical issues need to be addressed to achieve high uptake but the biggest barrier would appear to be cultural rather than technical. It therefore seems essential to offer and provide training and support to clinical teams as part of making real care planning and shared decision making a reality.
"NHS Direct as a platform for decision support for patients: evaluation of Phase1"
Department of Primary Care and Public Health
School of Medicine
Professor Glyn Elwyn, Research Professor
Ms Kalbir Kaur-Mann, Research Assistant
Mr Andrew Rix, Independent Research and Evaluation Consultant
Mr Tom Holt, Statistician
Ms Deborah Jones, Independent Researcher