Two posts ago, we discussed following contradiction about patient involvement. On one side there is growing evidence about the benefits of patient involvement for instance in disease self management, cost reduction and even research. Several positive examples have been discussed in this blog. On the other side, the case of patient involvement in osteoporosis showed disappointing results, for instance in Michael Bartl’s (Hyve) project for the Bavarian Center of Osteoporosis. Disappointing results that are underlined by the van Geest Study in the Netherlands.
So, how it is possible that patient involvement works and does not work at the same time?
How are you approaching patients?
The van Geest study gives some clues on why patient involvement projects fail. When explaining the rise of the patient empowerment movement, van Geest explains that it is closely linked to the rise of the consumer movement. He explains that in the United Kingdom the very word patient evokes passivity and that patients started to organize likewise the consumers: evolving from passive consumers to active consumers; in this case from passive to active patient. The weapon for this transformation is information, once a scarce resource, but now thanks to internet and social networks abundantly available to the extent that has changed somehow the patient-physician relationship. Patients are informed now and this gives them a power they did not have before. True, they know more about disease and treatments, but they still do not know how to actually treat diseases.
Patients as consumers
Although patients are partially customers too in the sense that they use a service they pay for (directly, by insurance or by taxes-another form of insurance), they are far more consumers of healthcare. When addressing osteoporosis cancers as consumers, as top customer co-creation expert Michael Bartl did (see study), the complexity of their life is widely ignored. Customer centered approaches want to know as much as they can about clients and design the best possible experience for them as long as this is relevant to the organization in terms of profitability or efficiency. If there is not an evident connection of patient’s life aspects and profitability, not much effort will be undertaken to acquire that particular knowledge. From a customer centered approach a patient is somebody who has a (health) problem and is ready to pay (directly, insurance or taxes) to get the problem solved.
There is nothing bad in this approach if you are conscious that getting cured is only a part of the patient needs. Take osteoporosis. Treatment to strengthen bones, the quick bone healing, relief of pain, prevention as well as depression episodes are some of the problems to be solved. But what about quality of life (how many things must I give up?) What about the psychological perception of oneself (is this really me, the one that used to be strong?) What about changing roles in family relations (Am I going to depend on my children?) What about the social identity of ageing with fragile bones (am I socially worth any longer?) What about labor identity (am I useful?) One may argue that this is very interesting, but not the task of a hospital or the task of a drug developer since it goes beyond it mission and resources. In fact, van Geest shows, that patient’s associations are not very interested in these questions, but in side effects of medication or suffering relieves and practical matters.
So, the customer centered approach is right? The example of the Bavarian Center Osteoporosis’ initiative shows that of course practical questions matter primarily. But also that not answering the second kind of questions may lead to poor results. The example shows a high intention of participation but low actual participation and also why the initiatives described by van Geest never went beyond the pure desire. Patient involvement was required, but patient needs were not addressed; just one part of them. Patients time, effort, suffering were demanded to get results clinical trials get anyway, but without improving quality of life, giving self-confidence, making the patient socially useful.
Instead the Bavarian Center for Osteoporosis offered a platform not very different from any consumer crowdsourcing platform, for instance of Nike or Starbucks. What is the use of sharing stories on a platform, when there are hundreds of webs as patientslikeme or internet forums where patients already exchange valuable information and organize themselves? How would you feel after being asked for collaboration to find your contribution in a consumer like site, where the only thing missing is a contest for crowdsourcing?
Instead a good outcome could have been the co-design of a better service for patient needs by the Osteoporosis Center, as for instance the La Paz Hospital in Madrid did with Crohn patients by easing admission for them: something very easy, unspectacular and cheap that means to patients quick attendance during a crisis.
The key verb of the former sentence is “means”. Understanding meanings is the most important factor for successful work with patients (and customers too). Later we will go back to meanings.
The conclusion is that a consumer like patient involvement has failed to understand real patient’s needs and patient meanings. As a result, the platform does not mean much to patients.
Patient associations represent patient’s interests, but are not patients
The case of Dutch researchers trying to include patients is different. Here the problem, as van Geest explains who we consider actors. Initially patients were part of the research efforts, but the actor was not the patient, but the patients associations. Patients and patients associations have the same interests: better treatments, scientific research, pain relief, etc. But the association itself additional interests: getting funded, lobbying, obtaining public relevance, advocating, etc. Our own work with patient’s associations confirms this observation: often, not always, the contact person is not a patient or former patient, but an association employee or volunteer. Often, not always, it is difficult to work directly with patients without the association’s control. Often, not always, the patient’s individual or collective message contradicts the association’s official message. This is very clear in the position over genetic testing of rare disease associations and the more tolerant position of individual members, as Ruth FitzGerald studies in New Zealnd reveal (see study).
Contrary to the pure customer oriented approach, working with associations is very helpful to unveil real patient needs, even those relating to quality of life or social identity: think of makeup and beauty training for cancer suffering women treated with chemotherapy. But their organizational interests and political position often prevent to get in depth and meaningful insights, as known from the case of genetic testing.
So, how to do it? The difference between what is wanted and what is needed
Successful patient involvement approaches and patient centered research experiences are not those that lack a customer approach or avoid associations. Successful cases include needs identified with patient insights and include a clear understanding of patient meanings. If we remain on the surface of (only) customer centricity and patient experience design, we risk doing things patients may want, but not need. This is something every physician knows best.
The Bolton diabetes network example shows how patient involvement works. Diabetes can easily be relieved with physical exercise. So all diabetes patients need physical exercise, but not all want to do it. But even the most reluctant to sport have something that brings them to movement: picking up kids for school, shopping, dogs, culture, etc. Working with patients helped to identify all these motivations and to design an easy and not expensive flashmob communities over an internet platform, where patients assign themselves to their favorite activity and actually get moved.
With patient and physician insights, Nycomed (now Takeda) identified the real need of a guide for palliative care to help physicians and families to deal with dying patients. Here the meanings played a key role: meaning of death, of farewell, of suffering, pain and relief. But are these meanings abstract, difficult to get concepts? No, they are practical, day to day questions, just hidden by urgency and immediacy.
Elements for a patient insight and involvement methodology
The reader may think that the effort of getting patient insights is a long, expensive process full of complex work, dealing with abstract categories far from practical orientation. The contrary is true, but like many things, it is a process working on two levels: short term very practical and specific work that is observed and researched from a different role by the (empowered) patients themselves in order that they become themselves aware about their real needs and about the meanings.
The key element of the methodology is trust and trust building requires transparency, a series of iterations with close human interaction and a clear benefit for the patients. Another key element is the wise combination of participatory action research, medical knowledge and ethnographic tools.
Definitely, the issue of methodology deserves a post for itself … or more.