On 23 November 2012, I visited the MEDlove summit in Berlin, a conference for UX, service design and health experiences. Ten international speakers highlighted dilemmas and opportunities to improve healthcare using principles from UX and service design.
Why did I attend MEDlove?
After 17 months of running numerous Internet projects for a major Dutch health insurance company, I was baffled by the vast number of apps, community portals and certification marks in the domain of eHealth. Why invest so much money in so many different initiatives? What were the measurable objectives and results? What connection would bind these initiatives into a meaningful ecosystem for care seekers, care providers and insurers? I was looking for answers to these questions.
What did I learn from MEDlove?
MEDlove provided keys to solve this “wicked problem” of health and care. You can’t resolve the problem by a single app or service to resolve waiting lists. In the complex triangle of care seekers, care providers and health insurance companies, each intervention will inevitably result in unanticipated side-effects elsewhere.
Healthcare by definition poses a “captain’s dilemma”, as each stakeholder characterized by conflicting interests:
- Each individual that becomes a patient wants the best possible care or treatment regardless the costs. As subscriber to a health insurance package, the individual wants to avoid annual raises of the premiums for his health insurance.
- Insurance companies in their ambition to control costs and quality of treatment by care providers, introduce registration, reporting and calculation systems that constrain care providers to devote the right quality-time and attention that each patient requires or needs.
The MEDlove buzzwords
- ‘Self awareness’ and ‘social experience’ of persons suffering from a (chronic) disease are the soft parameters that have a major influence on recovery or quality of life, alongside the measurable criteria like expertise or quality.
- Patient experience by definition falls short in describing the many phases and identities care seekers can represent, especially in the case of persons with a chronic or congenital disease.
- Design for phatic communication and make users feel you care how they feel.
- Let doctors do the doctoring.
- Design by co-creation with care seekers and care providers, “everyone can wireframe”.
- Don’t design for services, design for care.
Presentations at MEDlove
At the summit, ten international speakers addressed dilemmas and opportunities to improve healthcare using service design principles. This section will highlight the key insights of each presentation.
The Capitain’s Dilemma
Aleksandar Stojanovic (Razorfish Healthware) introduced “the captain’s dilemma” of care. Would you risk your life to save a loved one? And would you do the same for a colleague, you neighbor or faint acquaintance? Choices in healthcare by definition represent the case of individual versus society.
As a subscriber to a health insurance, you don’t like to pay more premiums without valid reason, as a patient you demand the best care, regardless of costs.
While e-health these days is all about big data and quantified self, Stojanovic argues that most individuals don’t show any interest in self-awareness about their own health. Innovation in health shouldn’t constrain itself to ease-of-use and user experience of e-health services. Each e-health service encompasses social experience and ecosystem.
Sense & sensemaking: How service design can help move us toward health
Designer, educator and entrepreneur Steven Dean (Prehype) zoomed in on ecosystem thinking with his presentation.
In two business cases on quantified self, Dean explained how service design and ecosystems could improve health and healthcare.
One of the major challenges in the recovery of patients is adherence to therapy. Apart form hard criteria like the expertise of the care provider or proven effectiveness of the therapy or drug, the fact whether a patient will actually follow or neglect the advice of the care professional will determine the recovery or quality of life of the patient.
Adherence to therapy is determined by two factors:
- Self-awareness about your health condition compared to others at present and in the future if you do or don’t change your behavior and your knowledge about what/how to change your behavior.
- Social experience of the requested change in behavior by the patient and his/her environment.
Big Data can attribute to self-awareness. In the Asthmapolis project in Barcelona, inhalers for asthma patients were equipped with Global Positioning Sensors (GPS). This way both doctors and patients were able to view how often, at which moment or geographical position they felt the need to use the inhaler.
By connecting and matching anonymised data of multiple patients, each patient could compare the individual situation versus that of others. Both patient and care provider could evaluate the individual’s result in relation with a patient’s difficulty to adhere to therapy.
An unexpected side-effect of the project was the ability to locate the cause of frequent outbreaks of asthma in a specific region near open water: A seaport with recurring soy cargo transfers in open air. Covering the cargo during transfer resulted in less outbreaks of asthma of participants, contributing to their feeling well despite the asthma.
Social experience is largely influenced by the level of understanding and moral support of family members, colleagues and friends. Especially when it comes to support the required change of behavior.
It’s easier to quit smoking, loose weight or engage in physical exercise if others support you to persevere. For example by joining-in, or gamification of your efforts setting targets, competition elements or bets.
To support the patient in consolidating a required change of behavior, communication shouldn’t be limited to the patient, but also target easy comprehension by family members, colleagues and friends.
People-centered innovation methods and strategies
Sylvain Cottong (strategybuilders.eu) emphasized the element van self-awareness and social experience.
For self-awareness, it is key that both professional care provider and patient speak the same language: blisters, lumps, ulcers, tumors, necrosis, cancer. Not only during the doctor’s visit, but also on websites, or when sensors, big data and apps are combined into an ecosystem for patients and professionals.
For social experience the element of game mechanics and social rewards (badges, trophies and likes) can support adherence to therapy.
Developing participatory design strategies for e-patients.
According to information architect Mark A.M. Kramer (Razorfish Healthware) software is “the future of healthcare social”.
In his presentation, Mark shared the insights he collected during the period he was subject to a series of medical examinations himself.
During this period, he transformed his personal illness into a project of participatory design and nomadic research, which helped him focus on the many challenges to provide innovation in healthcare.
Each patient has individual expectations about the level of recovery or length of a stay in hospital. Where one person would like to return home as soon as possible, other patients may perceive a stay in a hospital as the escape from reality or a result of the reality in their home situation.
Mark was amazed by the technology-gap in hospitals. Patients carrying smartphones or tablets that enable them to order a pizza in 5 minutes, while staff is occupied with paper-pen interviews to request what patients would like to have for dinner.
Doctors carrying pagers with the size of an iPad mini, but functionality comparable to texting on previous generation cellphones, can not plan appointments for a next consult or CAT scan, but need to refer their patient to yet another nurse’s desk.
Too much time in healthcare is wasted on collecting and processing data, at the cost of quality time for real communication between doctor and patient concerning the patient’s fears, expectations or drives. “…some days a nurse would actually talk to me.”
Communication is one of the major challenges in healthcare. If designers can simplify the process of collecting, analyzing and evaluating patient data, we can “let doctors do the doctoring.”
Usability of medical devices
Alexander Steffen (User Interface Design GmbH) described a case about user-centered design for medical devices and the obstacles designers face when developing or redesigning a new drug dosing delivery system.
Making a neat design is fine, but fruitless if one neglects the norms and associated paperwork of usability engineering files and patents required to obtain approval to release the product to the highly regulated market for pharmaceuticals and medical aids.
Steffen designed a new drug delivery system for patients with Parkinson’s disease.
It should be easy to handle for patients that suffer loss of control in their hands. Adding a telemetry option to the drug delivery system enabled doctors to analyze effectiveness of the drug and undesired side effects remotely and adjust the dosing for each individual patient immediately.
This way patients didn’t need frequent returns to the hospital for medication consults. They regained control over their personal agenda and perceived a better social experience of their situation.
Multichannel UX in the dawning age of digital healthcare services
The road to service design may be a long and winding one for the pharmaceutical industry as presented by Angel Brown (Digitas Health).
Traditionally, the pharmaceutical industry was far from user-centered. Pharmaceuticals were sold by convincing doctors of the effectiveness of new drugs or therapies. New legislation however has strongly changed the ball game by constraining the role of medical conferences in sunny resorts or account representatives talking their way into the doctor’s office.
Pharmaceutical firms now try to align or team with patient organizations to gear from doctor-prescribed to patient-generated demand.
However new players like Nike sportswear, or technology providers selling eHealth apps and services have entered the domain and are claiming the predicate “health”.
Service design can help pharmaceutical firms to think beyond the drug, leaflet, box and brand name to develop ecosystems with easy-to-use and understand insulin pumps or blood pressure reading devices that enable both doctor and patient to determine effectiveness of the drug in combination with changed behavior, so the encounter between doctor and patient can focus on how the patient feels, what the patient fears or expects and what the patient should do to achieve these expectations.
The connected individual: Mobile and psycho-social wellbeing
Rod Farmer (Visual Jazz Isobar) confirmed in his presentation the importance of true communication between care seekers and providers and in UX research projects.
As a specialist in usability research projects for mobile devices and services, he described a number of scenarios to obtain real and hones user feedback, rather than biased feedback in response to the researchers’ expressions or personal reactions.
One example is the use of personal logbooks, diaries or photo blogs that participants use to record or picture their personal feelings during medical encounters or phases of their illness. Results are discussed with the participant zooming in on the “when did you record this photo/note, what exactly this photo/this way”. Logbooks and interview findings are recorded on an emotion map with results above and below the line of expectation.
Key areas for improvement are the “ouch” moments that could have been avoided.
Improvements should be designed in partnership with patients and medical staff. Trust in relevant experience rather that endless collection of facts and figures to create meaningful storylines. Use these storylines in co-design projects to improve the services by value demand.
Keep in mind that
- Products are based on tangible and measurable output (what/how much do I own)
- Services are based on non-tangible appreciation (what does it mean to me)
- Experience will matter most. Therefore, a good design is all about phatic communication, making users feel you truly care about how they feel.
Go see the doctor: A customer journey from 3 perspectives
Research director Martje van der Linde (User Intelligence) demonstrated a business case from Finland that could provide a solution to the captain’s dilemma in the triangle of care seekers, care providers, and health insurers:
- Cares seekers want easy, accessible medical consults.
- Care providers prefer to dedicate their precious time to patients, rather than complying with the paperwork demanded by health insurance companies.
- Health insurance companies strive for grip on costs and quality of care assigning gatekeepers to limit referral of patients to medical experts or contracted health institutions.
Yes apps that simplify scheduling of appointments, e-consults by webcam, or e-health portals can provide easy access to medical information. However humans that function in context of family, work, and communities also worry about simple things like “can I park my car nearby”, or “I want to see my doctor face-to-face to judge his judgment.”
Insurance companies would like to advise their clients in discomfort between itch and first doctor visit to avoid unnecessary consults and costs. However, most care seekers doubt whether their discomfort is serious enough to see the doctor. Care providers would like to spend the time each individual needs, the moment it’s needed, however also care providers need time to rest.
Laastari in Finland introduced easy-to-enter medical servicepoints in shopping malls and railway stations. Care seekers can enter without appointment 7 days a week.
A nurse practitioner will listen, judge and comfort. If required the nurse can use a tablet application to consult or schedule an appointment with a specialist right on the spot. A convenient, accessible and cost-effective solution to provide care.
Meaningful products require a network approach, intervention in network require social experience of the stakeholders and their (hidden) interests and fears.
How patient empowerment drives human-centered innovation in research and healthcare
Management consultant Wiebke Lesch expressed in ‘Humans first!’ her doubts about framing the new UX niche as PX (‘patient experience’).
What is a patient? Is it the context of a human during a doctor’s visit or hospital stay? Humans with a congenital or chronic disease go through different phases of the illness and constitute different identities. As a child, adult, senior or as a relative, colleague, member of community or representative of a patient organisation. Each touchpoint should provide the approach and communication that matches the phase, anxiety and expectation of the individual at that moment in time in the context of the individual’s medical history (‘context-aware experience’).
The phase in life has a strong influence on self-awareness and adherence to therapy. Lesch illustrated this by lessons learned from the Corience network, a network for people with a congenital heart disease.
During childhood, parents tend to overprotect their children. Parents are aware, maintaining close contact with medical experts and control the social experience taking responsibility for therapy adherence.
During adolescence, young patients tend to ignore their condition. They may engage in reckless behavior trying to cope with their friends and their desire to be as “normal” as possible. Self-awareness of the long-term effects of their behavior is declines rapidly, affecting the adherence to therapy.
As young-adults, moving out of their parents’ home, self-awareness is low. They feel good and do not yet suffer from effects of reckless behavior or low therapy adherence.
As they grow older, the effect of their congenital disease will (re)appear and have deeper effects on their social experience. The demand for medical care will increase, however the effects of years of low therapy adherence are not reversible.
The Corience network engages children, parents, medical experts and journalists to collect, publish and share information about living with a congenital heart disease. This way individuals can easily share information about their situation in a language that is easy to understand with relatives, colleagues, friends or members of community. This improves the social experience of the disease, as it will become easier to involve others in their situation, and leverage support to keep up with the required change in behavior.
Designing for community: Future of healthcare service innovation
Keynote speaker Peter Jones (Redesign Research) confirmed in his thesis ‘Designing for community‘ that it’s all about people, not patients.
The “patient-context” is but a temporary phase. Innovation in healthcare too often is addressed via single interventions with a limited focus on single defects.
Health and care constitute a chain of services, where the center is a human, not the disease, the medical intervention or organization.
The social context of a disease emerges everywhere, at home, at work, in relation to relatives and friends. Care is a circle of attention and affection that tends to decrease as the disease procures.
The context and identity of individuals with an illness may change accordingly. From a relative or colleague with a discomfort, visitor during a doctor’s consult, case for medical intervention to ambassador of a patient organization.
Innovation in healthcare experience should facilitate care seekers by re-distributing care over family, community providers and patient providers.
As an example, Jones referred to a Mayo Clinic project to promote breastfeeding. Mayo Mom was designed as a peer-to-peer project where young mothers train new mothers in their neighborhood, instead of inviting new mothers to travel for miles to attend training sessions on breastfeeding at a remote hospital.
The future of service design in healthcare is co-creation of care. Don’t design for interventions, but design for care, design for health. There are plenty of opportunities to reshape the contexts of:
- Consumer health
- Care practice
- Healthcare organizations
- Education, policies and institutions
The next MEDlove is when?
That’s not fully clear. In november 2012 the ambition was to setup a new annual conference. However at present, no details have been announced about a next session. Informal channels indicate organizers are looking at a next event in Spring 2014. The doctor will be with you soon.
