What can be considered and what not patient involvement
Let us start with like impatient readers that open the last chapter of a crime novel in order to see who the murderer is. Patients rarely participate as co-researchers and rarely get involved in clinical improvement, evidence says. And yet, evidence shows too, that patient involvement is a powerful tool for improving clinical results as well as relieving healthcare systems of costs by assuming part of the disease management by the patients themselves. How is it possible that patient involvement does work and does not work at the same time?
Patients and consumers
There is an increasing interest in patient involvement and patient co-creation, also in pure therapeutic questions, as a way to increase or ensure patient adherence. It is argued, that patients have a special knowledge about their disease that physicians do not have: they suffer it and know how it is to live with the illness. These insights may for sure give clues for clinical research. On the other side, adherence to treatments depends on social and cultural behavior; understanding better patient’s needs would improve adherence. And finally, patients are the users of healthcare systems and can bring in all the necessary knowledge to improve their experience as users.
If co-creation works by increasing customer acceptance, why shouldn’t it work in healthcare?
And this exactly the danger; although involvement and action research (former concept for co-creation) have a long tradition in healthcare, the current hype around involvement is pushed by marketing and its healthcare version of patient satisfaction and patient experience.
While there is nothing wrong with improving patient experience for marketing reasons, there should be a careful approach when using patient involvement for clinical purposes. Healthcare is not a commodity and patients are not only consumers, even if there is undeniable healthcare consumption and there is undeniable consumer behavior. This is true in countries with strong public healthcare systems and also in countries with a free health market like the US or where there is not state or private insurance, such in many countries of the world.
Yet, illness and disease are far more knotty than consumer choices for they affect the very self of the individual, shape its identity and have complex impact in family, society and policies. The point is, that patient involvement.
In this post we will describe two approaches of patient involvement in the case of osteoporosis: the marketing oriented approach and the clinical approach, as well as the gap between expectations and reality.
The consumer centered approach
Osteoporosis is a progressive bone disease that is characterized by a decrease in bone mass and density and that leads to an increased risk of fracture. In osteoporosis, the bone mineral density is reduced, bone microarchitecture deteriorates, and the amount and variety of proteins in bone are altered. Especially women after their menopause are more likely to suffer from osteoporosis. It affects 55% of individuals after the age of 50; 80% of them are women.
The high social and economic impact of osteoporosis induced the Bavarian Center of Osteoporosis, an institution linked to the Munich University, to start a co-operation with the renowned co-creation and crowdsourcing company Hyve in order to find out if patients could become partners for co-creation in healthcare. Why? Involved and participative patients can manage their disease, relieving healthcare systems and insurances of some of the costs.
The study was conducted by Michael Bartl, an outstanding researcher, also long year Audi R&D manager, responsible for Audi’s open innovation program, as well CEO of Hyve and thus practically oriented innovation consultant. He asks himself how patients assess the potential of involvement in osteoporosis management, if they are willing to participate in co-creation activities, what motivations for participation would be and what key roles they see for themselves.
It is interesting to read the introduction of the study because Dr. Bartl starts comparing the empowerment of consumers with the empowerment of patients “who are in the end also consumers of health services”. And while describing the research questions he does not talk about patients, but about consumers. I believe this approach biases the study. Indeed, it is very well conducted from the methodological point on view … as a market research study.
The results are very positive; most patients show a very positive role towards being actively integrated into disease management of osteoporosis. 80% of participants showed willingness to participate actively in disease management. Motivations ranked from the desire to acquire more knowledge to be acquainted with new methods of diagnosis and treatment; also support for their fellows was an important motivation.
The roles the patients envisaged for themselves were: advisor for other patients (25,6%), personal health manager (31,8%) and participant in clinical and medical studies (34,8%).
Disappointing practical results
Dr. Bartl’s results are very similar to those described for the Netherlands by the medical anthropologist van der Geest (see link). He also sees the connection between the rise of patient power and the consumer movement and describes how in the early years of the 2000 decade, several initiatives for patient led research were launched that showed high interests in patient involvement and produced interesting research papers. But looking closer to the papers it appeared, that all innovated in patient inclusion methodologies, but “none reported on the outcome of research”, because no patient-physician research was done.
The osteoporosis study had also few practical consequences: an information event, patient information and a webpage (http://www.osteoporosemonitor.de) with the possibility of participating in an on line study, telling your patient story or taking an osteoporosis risk test. I am not aware that the Hyve study has lead to greater patient self management of the disease, to patient peer to peer advising or to closer patient-medical research.
Patient involvement works, but how?
Research tends to confirm that the efforts towards patient involvement do have little consequences on disease management and co-research. An interesting article by Dr. Steven Novella (link) shows that in a survey conducted among 22.000 American patients over 70% wanted to leave decision making in the hands of physicians and that “Preference to participate in medical decision making increased with educational level and with private health insurance … patients who preferred to participate in decision making concerning their care had a 0.26-day longer length of stay and $865 higher total hospitalization costs.”
Yet, there are successful examples of patient self management of disease such as the Bolton Diabetes Network in the UK or the Kronikoen Sarea Netowk for chronic disease management in the Spanish Basque Country or the patient schools, only to quote two of plenty. There are also interesting patient centered research outcomes in the U.S or in Spain (Low Syndrom).
The reason for this apparent contradiction is that success or failure of patient involvement depends on the chosen approach and the inherent meanings; issues we will explore in the next post.