How has the definition of the quality of healthcare evolved in recent times?
The definition has not really changed since the 1960s, but it has different aspects. Avedis Donabedian already spoke about quality, but the things that were important were the process and the result. In the 1970s, Cochrane spoke about effectiveness. One thing is efficacy – the result obtained from treatment in ideal conditions, in the laboratory – and another is effectiveness: the use of the treatment in the real world. The third aspect, which completes the last two, is clinical safety. These paradigms: process, result, effectiveness and safety, form part of the world of quality.
And what is the characteristic of this world of quality?
That until then, everything was done for the patient but without the patient. Ten or 12 years ago, a new paradigm shift emerged in the definition of quality: value. Healthcare is of high quality if it adds value from a patient’s perspective. And when you speak about products, you can define standards, but when you speak about services, the person who receives the service is the one who defines the quality. It’s like a painting: the person who defines whether they like it or not is the observer, not the painter. So, what was done was to pass on to the patient the definition of the quality of the service, depending on whether it added value or not.
The first pillar of quality of a service is safety
Therefore, we are saying that patient experience is an important element in the definition of the quality of the service.
In fact, patient experience is the third pillar of quality. The first pillar of quality of a service is safety; the second pillar is effectiveness, that it is useful for something. And the third is patient experience: their experience with this service that they find safe and effective. What “price” does the patient have to pay? (We are talking about the impact on the person, not a monetary price). And this definitely is a paradigm shift. We speak about safety and effectiveness, the technical area, plus the third aspect, which is patient experience, the perspective of the person receiving the service.
And how is all this applied in practice?
With the Catalan Agency for Health Quality and Assessment (AQuAS) we have drawn up the document, “Key elements that influence the patient’s experience”, which identifies 12 areas in which patient experience can be important. They have nothing to do with the clinical results; they are complementary: I can ask the patient about the quality of the information, about whether they have participated in the decision-making, about whether navigating the system has been comfortable… This is an important step forward because it is quantifiable. This approach allows us to define the “Patient-reported experience measures” (PREMs).
How has the patient participation model been implemented at the Hospital Clínic?
We knew where we had to start: focusing on the quality of the information that was provided by the hospital. But information alone does not solve everything, and the second step was to ask whether the information was useful to the patient for improving the management of their illness. This is the objective of structured therapeutic education. The third step led us to ask ourselves what tools each patient needs. We identified unmet needs and preferences, so that structured education could address the patient’s needs. And finally, there is a fourth step, which is to promote participation. The combination of all these elements allows us to improve services.
So that the entire process makes sense, the ultimate goal is to improve the service. How has this been done?
By proposing a deliberative model, because we need to speak about participation. And this is the logical evolution we have had in the hospital. It is the PIEEX model (Participation, Information, Education and Patient Experience), which in theory is explained with a pyramid. However, in the real world everything is more fluid and we work at the intersections of these areas.
Implementing this model in a hospital like the Hospital Clínic must not be easy. What is your assessment of this?
Any task of this type requires patience and perseverance. From a professional point of view, the overall picture is very good. And from a results point of view, there is room for improvement. The challenge is to ensure that this leads to change. So, we have been working trying to respond to teams of professionals who wanted to work on these issues, and with a very close relationship with crosscutting projects in the Strategic Plan 2016-2020, who have asked us for support.
Do you have any examples of success stories?
For the last year, we have been working intensively with the Hospital Clínic Nephrology and Urology Institute (ICNU), where we identify problems and create focus groups with professionals and patients to find opportunities for improvement. We then put these improvements into practice, and we assess them together with the patients. It serves as an example because this is what we put into practice within the conceptual framework that we want to develop: to understand the problem (identify unmet needs), to explore (to what extent it is generalizable), to experiment (promote changes) and to evaluate.
What problems have been found and what has been done to improve things?
In the case of the ICNU, both the patients and the professionals detected that there were some problems related to the information on the kidney-pancreas transplantation care process. In this case, four major areas for improvement were detected. From this point on, the ICNU management promoted organizational changes, improved telephone accessibility, more efficient organization of the programming; and addressed healthcare areas that were missing such as a psychologist, a nutritionist and a physiotherapist. The ICNU management also improved dissemination through the production of videos and a newsletter, and new services were also created: the medicalized hotel and the figure of the volunteer navigator. Since a lot of the ICNU patients are from outside Barcelona, it is important to welcome them properly at the hospital. And there is a volunteer who helps and guides new patients.
We use seven commandments, and the first is not to make assumptions
Would an important premise in this model be not to take anything for granted?
We use seven commandments, and the first is not to make assumptions, a very useful concept. The second is that blurry vision is better than no vision at all. From the technical point of view, we are obsessed with precision, but from a patient perspective, we are not. The third thing we find hard from a technical point of view is that the patient is interested in the whole care process, and not just in isolated procedures. The fourth commandment is to try to adapt as far as possible to the patient’s needs, which always differ from one patient to another (the “one-size-fits-all" approach does not work). The fifth, as we have already mentioned, is patience and perseverance. The sixth is that the professional’s experience also matters, and both perspectives need to be taken into account. Finally, the seventh commandment is that none of this makes sense unless we want to take action, to change things.
Where should the future of the Hospital Clínic patient experience model be heading in 5 or 10 years’ time?
I would like to fulfil all these objectives that we have and consider how to make patient participation a reality in the areas that affect the Hospital Clínic directly. The patient can participate in making decisions that affect them directly. These decisions shared by the patient and the professional represent a very important area in which we have room for improvement. The patient should also be able to participate in the co-design of new services and should be involved from the very outset. They should also be able to participate in the governance of the institution and a good example of this is the Patient and User Participation Committee. Finally, patient participation in research is of key importance. The researcher must be able to ask society what needs it has, in order to see whether they link in with their research projects, and thus address both parties' requirements. There is a fifth area of participation that refers to healthcare policies and is more specific to the Department of Health.