Patient experience and Co-Creation in Health

Co-creating patient experience in health, pharma and wellbeing

Patient Experience in Fertility 2: practical examples on how to apply it to clinical practice

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The latest post described how important patient experience is in fertility in contrast to the small amount of research done in the field. We promised to describe examples from clinical practice on how to improve patient experience and by that achieve significant impacts for patients and the organization.

May be it is not very modest to start with one’s organisation and one’s work. But I cannot help to feel very proud about what has been achieved at IVF-SPAIN, which not by chance is one of the fertility clinics with highest certified pregnancy rates in Europe and also one of the most innovative. Possibly only huge groups like Genea in Australia with its development of fertility automation technologies like vitrification automation, as well as its and own consulting company and IVI Group with its subsidiary Igenomix have gone further in R&D and technology development than this midsized clinic in Alicante.

Meaningful relationships
Because it is certainly not modest to start with my own organization, IContext-1 want to highlight first the project of Aliza Gold done at RMA Texas in 2013. The full case can be read at this slideshare presentation. I like this particular project because it applies a use
r centred approach. They first acknowledged the highly emotional aspect of fertility treatments. Then the made an ethnographic immersion into the clinic, becoming embedded with staff and acquainted with processes in order to find out what is the real patient journey as well as all patient-staff interactions. The solutions concentrated in creating meaningful relationships with a coaching services for one to one interactions, as well as dedicated care teams.

The case of IVF-SPAIN was a radically different one, since its founder Dr Aizpurua was very conscious about the importance of meaningful relationships and patient centricity from its very beginning. For instance dedicated care teams and one to one interaction protocols were part from the clinic from the first day. What it did not have was a proper system to really listen to patients, manage patient insights and engage patients in co-design, decision making.

stress fertility

Fertility patients need a to be actively listened

How to listen to patients
Listening to patients is not the work of the quality and patient experience manager. It is the work of every single employee. The PXO has to create the right culture and ensure the proper training, so that each employee can be an active listener and work within the continuous improvement system to transform the gained insights into a better patient experience or even innovation. This way of working has produced at IVF-SPAIN following improvements of patient experience:

Mitigate the egg donation shock: Many patients –specially form Germany and Switzerland- come to IVF-SPAIN directly for egg donation, since it is allowed in Spain, but not in those countries. Yet, many come for traditional in vitro fertilization (IVF) and from those, a significant number gets an indication for egg donation, mainly due to age, but also due to ovarian reserve, high aneuploidies, etc. One third gets a shock when they learn that their offspring will not be a direct descent and genetically related to them. Often they do not express this shock or fear to the physician. But they break down when the assistant comes to them after consultation.

Most fears resembling genetic kinship are not so much related to physical appearance or IQ (although genetic determinism is very powerful), but on emotional questions: will the child love me the same, will I love the child the same, will the child be healthy compared to “normal” kids… those are the most common worries. Worries coming from genetic determinism believes are related to the question “will there be something of me in the child?”

As a team we have worked on this problem and developed:

  • A communication and counselling strategy for the assistants for meaningfull conversations with patients on the topic.
  • An information kit for patients with an easy resume of evidence scientific evidence of emotional development of egg donation children, following guidelines of the Spanish Fertility Society.
  • If they need in depth information, a resume of relevant articles on the issue.
  • For those that insist on genetic resemblance despite all the previous counselling and information, use of 500 ancestral genes on the Recombine array to determine genetic kinship with the donor.

Smooth and comprehensive first consultation: In the last post I stated that daily needs

IVF ARQUITECT 1

At IVF-SPAIN protocols, processes and technologies include patient co-design

require strong PX approaches. A good example is the first time a couple has medical consultation regarding fertility problems. The patient journey map has showed a complex setting of feelings: fear not being able to conceive, fear about what is the treatment about with all its complexity and need of medication (most needed to be injected, another source of fear), economic uncertainty, since treatments are expensive, the already described fear of not having a genetic link to the baby, anxiety, sadness, social stigma, identity problems (self-image as a woman or as a man, when not able to conceive) and many others. In the case of IVF-SPAIN, 95% of patients are from abroad, so that they are in a strange country and have less sense of familiarity and control. That doctors, nurses and assistants speak German and English mitigates this feeling in the clinic, but not outside.

In such an emotional state, many patients possibly miss over 60% of the information, information that is not only purely medical: embryology, genetics and pharmacology are part of the issues a couple needs to understand. Also other complex issues, like immunological or sperm tests, endometrial receptivity as well as the complex procedure of egg donor management. There are also many informed consents to sign as well as legal requirements, not to talk about ethical questions; some couples try to conceive when they are over 50 years old, others try to convince doctors for sex selection, etc.; and reasons for denial of these wishes must be well explained. Last but not least, all this information has a financial side and it is often difficult to understand the cost structure of a treatment; it is not rare that patients suspect the clinic of overselling.

The combination of feelings of insecurity together with overload of information –possibly heard for the first time or read from internet without resources for assimilation- can produce emotional reactions that go from silence to anger and they are often not expressed within the clinic. They slash back as complaints may be months later and the important question is not the complaint, but that may be a little error unleashes strong emotions that have been loading up over time.

For this reason it is very important that this first consultation is designed so that step by step fears can be lowered and information is also given step by step in doses that patients can assume gradually the knowledge. The co-desgned protocol also helps to create the right mindset for those people unfamiliar with reproduction.

journey fertilitySurveys are good, but not enough
At IVF-SPAIN we have a patient satisfaction survey, like most clinics. It is a survey that follows the recommendations of the patient-centeredness questionnaire-infertility (PCQ-infertility, see Article by van Emple and Kremer). Yet, if we aim for patient experience instead of patient satisfaction, then the survey is not enough. It is not so much important to know that satisfaction decreased by 5% at a given point, but rather that we can see at which part of the journey and what exactly happened. If we wait to have statistical significance it is too late. Therefore we monitor weekly the survey tendencies and pay special attention to the qualitative comments.

Complaints come only from very angry patients, and these are really under 2%. So, monitoring qualitative comments has been key for to improve patient experience by:

  • Allowing doctors more time for preparation
  • Design clearer medication plans
  • Create a quieter environment at reception
  • Manage better medical and economic expectations

Patient insights for strategy
Patient experience is a key strategic asset. For instance, we noticed that at internet forums, German and British patients were expressed their doubts that egg donors in Spain would be suitable due to dark skin and hair and therefore thought that Czech Republic would be a better option than Spain. German anthropologist Sven Bergmann found similar results in his research and explains that patients assume wrongly a correspondence between  ethnic background and nation.We could also simply about racial prejudice.

As a result, a research on the ethnic composition of the province Alicante was undertaken, including also national origins of female students at Alicante universities. Results should not be surprising given the fact that Alicante is home to many European residents: over 20% of the target population is of British, central, Nordic and eastern European origin. The research was published in several fertility magazines for patients. The information is also included in the communication assistants and doctors offer to the patients.

An ethnographic approach as well as a statistical analysis of complaints have shown that patients from different nationalities tend to assign a different value to money. For instance, Dutch patients tend to have a very rational relationship with money clearly linked to a “give and take” mental scheme. To the contrary, Germans tend to assign emotional and affective values to money, while British patients tend to see money as a value in itself. This has led to different pricing approaches by nationality with good results. Money is a part of the patient experience in private medicine.

Patient engagement and technological innovation
Process and technology co-design are very important for patient acceptance. For examplepatients were involved in the design of IT systems at the early stages of IVF-SPAIN, when

medical technology

User acceptance of medical tecnology increases with PX approaches

there were no resources for commercial solutions. These patient co-designed systems were soon outweighed by the clinic’s growth and they had to be changed by commercial solutions. When patient co-designed systems have been substituted by commercial standard or tailored systems, the result has been always suboptimal. As a result, IVF-SPAIN develops now its own IT systems based on patient insights.

A similar approach was used with the preconcpetional test Recombine and patkient acceptance increased dramatically.

Tools needed for managing patient experience in fertility clinics
From the IVF-SPAIN experience, there are several tools that are very useful in order in engage patients and design better experiences, protocols, processes and technologies:

  • Empathy map: a first approach to make employees to get in patients’ shoes
  • Patient experience map: a key instrument that identifies all touch points and the emotions linked to interactions
  • Co-creation and co-design: it is not always easy with ambulant and foreign patients, but increase of acceptance pays off
  • Design thinking: helps to design, prototype and test including the patient’s experience
  • Ethnography: how to  identify insights, unveil relationships and discover meanings. A first qualitative step that unbereable for qualitiative research
  • Action research: a strategy that allows systematic reflection and creates practical outcomes

Next challenge: patient empowerment
Patient empowerment is born out of the increase of chronic diseases. Patients that are able to manage their disease and co-decide use less medical resources and need less medical visits. Fertility patients are said not to be chronic patients nor is infertility really considered a disease.

Yet, this is not completely true. Many patients spend years trying to achieve a pregnancy. For many it has become a way of living for a couple of years and even a form of identity, as Sarah Franklin argues in “Biological Relatives”. True, they will not live their whole lives with as fertility patients, but many invest two, three or four years. During this adventure they really become expert patients.

They have all the requirements to become empowered patients. This is now our challenge.

Autor: Carlos Bezos Daleske

Siento curiosidad por todo lo relacionado con personas y organizaciones, especialmente en salud. Me gusta trabajar con personas y con su capacidad de innovación y co-creación. www.iexp.es I feel very curious about everything related to people and organizations, especially in healthcare. I enjoy working with people and their ability to innovate and co-create. www.iexp.es

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