Patient experience and Co-Creation in Health

Co-creating patient experience in health, pharma and wellbeing

Consumers or patients? two approaches to osteoporosis patient involvement – Part 3

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Plus 14 tips to make a good patient engagement project

This last post before Christmas wants to close the discussion opened in October and followed in November, on adequate ways to involve and engage patients in order to improve adherence or gain useful patient insights. The case of osteoporosis showed that there is a difference between wanting to co-create and contribute and actually doing. There was also a contradiction between studies showing evidence of benefits using patient engagement and poor outcomes when analyzing real cases.

patient engagementIn the second post we saw, that patients treated as consumers were more likely not to get really involved and also that working with associations had the danger of serving associations interests, which can be very positive, but gaining little patient insights. We also saw some positive cases that worked, but we did not enter in why they worked. They work both with top down approaches and bottom up approaches.

 Top down patient engagement
If we take as an example the work done with osteoporosis patients of Kaiser Permanente and described in this link (with further links to scientific work) we will see that this American consortium of health care organizations has managed to reduce bone fractures by 38,1%. The basis is a specific diagnosis tool to measure bone density, and then to use not only the orthopedic surgeons, but all specialties that have relation with bone disease: “Kaiser SCAL has a fully integrated Healthy Bones Program in place at all eleven of its medical centers. The Healthy Bones Program was established by having orthopedic surgeons serve as champions in a large multidisciplinary team comprised of healthcare providers from the following disciplines: endocrinology, family practice, internal medicine, rheumatology”

Where is the patient? The Kaiser program uses a physician-patient interaction approach where the main actor of the ecosystem is still the physician, who is encouraged to make a more aggressive diagnosis but also. But patients are encouraged to make changes in their way of life, which can be done only with their active engagement in order to ensure adherence. According to a post in Onmedica “it is estimated only about 20 per cent of fracture patients have anyone talk to them about bone health that might have contributed to their current fracture and the risk of future fractures.”

The article says also that a study published online in Osteoporosis International found that patients who understood their potential risk for another fracture were the more likely to take action. Patients from 37 fracture clinics around Ontario completed a survey about their perception and knowledge of osteoporosis.  The results showed that most patients did not perceive themselves to have a bone health issue and therefore would be less likely to follow up with their physicians to discuss their options. Most had no idea that a fracture that has occurred after the age of 50 and from a slip, trip or fall from a low height could be the first indicator of a bone health issue.

osteoporosis 3The Kaiser adherence program works on four pillars: good mapping of who the main actors are: in this case, doctors from specialties related to osteoporosis that usually do not diagnose osteoporosis. The second pillar is technology. A specific diagnosis tool makes it easy for non specialist physicians to prescribe and interpret diagnosis and also the patient to accept the test. And the third and very important pillar is involving patients to really change their habits in relation to bone diseases. In this case with the on line support “your lovely bones”. Patients are the ones who become active. This needs more than medical prescription, but support from the physicians and the Kaiser organization: online information embedded in the medical appointment system, as well as training and courses, as well as “evangelization, as done in the Kaiser Permanente Center for Total Health.

As a fourth pillar, it also needs shared decision making, a trend that is growing taking advantage of the information patients have now at their disposal. To see what works in shared decision making it is interesting to read this article of Angela Coulter. The issue is interesting and important, but we will come back in another post.

The top down approach works as we have seen, but it needs heavy investment in physician and patient training / coaching, as well as in marketing.

Bottom up patient engagement
A bottom up approach reduces the costs, because patients are those that take responsibility, as we see in the case of Boniva, an osteoporosis drug produced by Genentech (Roche). The company needed, as many, to improve the adherence to the drug. And it managed to increase adherence by 107%. Here the solution started again with a stakeholder mapping, but instead of using the physician as the main actor, the strategy focused on the patient. In a series of co-creation sessions  lead by Bridgeable to work through specific ways to improve the user experience. The team developed several concepts, prototyping and problem solving, arriving at the final solutions which were then validated in field with physicians.

Through primary qualitative research, Bridgeable’s social scientists discovered that physicians needed an innovative tool to communicate the risks of osteoporosis to patients, and resources to help patients adhere to their treatment. Furthermore, the brand was found to be undermined by the look and feel of existing promotional materials. patient involvement

The solution included redesigning a Boniva “starter kit” (visuals and content, packaging, etc.), and information tools (including drug information and sales guides) for use as education aids for physicians. Upon rolling out both solutions, the product’s credibility was maximized and resulted in performance of 107% of target.

The bottom up approach increases patient acceptance as solutions come from patient experience, but it needs of course strong medical participation. Marketing expenses are necessary to redesign products or new services of the kind “beyond the pill”.

Treat patients as individuals, not as consumers
Notice that in both examples, patients pay to a private company –healthcare or pharma. So they are consumers too, but they are not treated as consumers with needs to be satisfied, but respected as individuals that suffer. For me this is the main lesson of this series of three articles of patient engagement in osteoporosis, and the first tip of 14.

How to make a patient engagement project work
Working with patients has a micro and a macro level. Just as in genetics, technology gives you lots of data, but not enough information, and classical biochemistry gets lots of information and very few data, working in a co-creative manner with patients gives you golden insights you would never get by market studies, but only on line programs give you the data for successful massive impact.

Other practical lessons when thinking about patient engagement, whether bottom up or top down:

2. Invest in patient mapping
3. This means investing too in some previous research on social contexts of disease and use of ethnographic approaches
4. Chose the right actors for your strategy out of the map: maybe it is families or insurance, not physicians or patients
5. Produce trust, so that you’ll be trusted
6. Don’t forget incentives
7. Work must solve a real problem
8. It must be fun
9. True that I said learn as much as possible about tools, forget it, and do as the project demands. Or as María Beunza of HappenInn consulting quotes a former boss: “with tools I am not believer, I am practitioner”. But there is one approach that will work often, which is applying participatory action research strategies.
10. Master as many tools you can and then forget about tools and make for each case a specific pathway
11. Invest in micro work with patients: this is more than just focus groups. Set up longer co-creation projects.
12. Mix actors and disciplines
13. Work by workshops, not by meetings
14.Transform the gained insights in impact with on line macro work: crowdsourcing, social media conversations, netnography, on line communities and big data turn insights in results.







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. 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.


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