CIRCLES of Care - Helen Hamlyn Centre - Royal College of Art

CIRCLES of CareA new approach to healthcarebased on social networksIndri Tulusan

CIRCLES of CareA new approach to healthcarebased on social networksIndri Tulusan

ContentsResearch partners 4About the author 5Executive summary 7IIntroduction 11Cure or prevent?How are you?Designing for social networksIIResearch 14Research mapDesign ethnographyResearch toolsIVThe Circles of Care space 24RelatednessLife eventsActivatorsIIIDraw yours 22VMap of the Circles of Care 32VIHealth as a social activity 34Who will play a role ?VIIService narratives 38Case studiesService narrativesVIIIConclusion: where next? 48Bibliography 50Acknowledgments 51

4°5Research partners Research partners Research partners Research partners Research partners Research partners Research partners Research partners Research partners Research partnersResearch partnersThe research project is a collaborationbetween the Helen Hamlyn ResearchCentre at the Royal College of Art andtwo industry partners, healthcare productdesigners Pearson Matthews and mobilenetwork company Orange.The Helen Hamlyn Research Centre wasset up at the Royal College of Art in January1999 to alert design and business to thefar-reaching implications of a rapidlychanging society. It works to advance asocially inclusive approach to designthrough practical research and projectswith industry. Its Research AssociatesProgramme teams new RCA graduateswith industry partners. www.hhrc.rca.ac.ukPearson Matthews is a design consultancythat for many years has focused on healthcare,believing that design has a great dealto offer when used to make connectionsbetween individual, commercial and socialneeds. Their strategic futures thinking ismatched by their proven ability to deliver –taking research and developing it through toground-breaking products. www.pmuk.comThe Orange group is one of the world’slargest mobile communications companiesand a subsidiary of the France Telecomgroup, with operations in 19 countriesacross Europe and beyond. It provides abroad range of personal communicationsservices, including Orange GSM1800services and other digital cellular telephoneservices. www.orange.com

About the authorIndri Tulusan is the daughter of two doctorsand has always been fascinated by how thebody works. She initially studied medicinein Germany, where she grew up, beforetaking up product and furniture design atKingston University. Understanding patientcontact and dealing with basic humanneeds proved an excellent foundation forher under-standing of human behaviourand her subsequent interest in interactionand experience design for well-being.In 2001 Indri graduated from the RoyalCollege of Art with an MA in ProductDesign. Her final project about a mobiletechnology service (entitled >olu)won the College-wide Lattice Award forSustainability. During her studies, Indri’sproject IntelliSkin (developed with KellySant), wearable biomedical screeners, wonthe Kenny Yip medical innovation award andreceived sponsorship from Orange.Indri has worked in design research formajor companies such as Philips and Nokia.She is also active in international researchconferences such as Doors of Perception inBangalore, where she presented a projecttitled Wandervogel, developed at the HelenHamlyn Research Centre with researchpartner Cityspace.Her work with her design practice Teko hasreceived national recognition from NESTAand D&AD, and she has just completed asecond Helen Hamlyn Research Associateproject with Pearson Matthews and Orange.This book is the outcome of that study.

6°7

Executive summaryThe Circles of Care project began with thequestion: what role can communication andself-monitoring technologies play in helpingpeople maintain a proactive approach totheir health and well-being?The study was set in the context of westerneconomies struggling with escalatinghealthcare costs and growing calls for aparadigm shift – from a system that simplytreats ill patients to a model for healthservices in which the focus is on preventionrather than cure.The study took an experience designresearch approach to investigate, first, whatneeds people have in maintaining theirhealth. It compared different health modelsto analyse how they give the patient apassive or an active role.Using design ethnographic techniques, theproject conducted a cross-cultural analysisof individual attitudes to maintaining healthby focusing on a user group of 20 people(ten in the UK, ten in India and Italy) whohave recently moved to a new town orcountry. Displacement was used as thecommon element. This enabled people tofocus on the relationships that support theirhealth beyond self-reliance.The findings of this research revealed thatpeople have three universal requirementsto support their own health: fitness ofbody, autonomy of mind and relatednessto others. The value of relatedness (beingsupported by a social network) and the

8°9need for trust were more apparent in India,but were also strong factors in the personalexperiences of other nationalities.From the research findings, the studyestablished the proposition that, there is an‘inbetween’ space between self help andthe expert help of medical professionalsthat has received relatively little attentionfrom designers, manufacturers, service orsocial providers.This is the social network of friends,family, work colleagues and neighbourhoodfacilities such as health food shops andfitness centres which operates alongsidethe GP or hospital professionals in helpingus to maintain our health. The projecthas identified the social network as acomplementary healthcare model and givenit a name: Circles of Care.The outcome of the project is a map ofthe space inbetween self help and expertmedical help, which shows how we build,adapt, share and pass on our personalhealth network. It is a way of thinkingabout healthcare as a social activity as wellas a the medical one. How these needsare changing is illustrated in different lifestages.This publication explores the opportunitiesoffered by Circles of Care. It outlines theconcept and defines its players, activators,experiences and emerging user needs.It identifies an area for development andindicates how networked technologies canactivate solutions within it. It demonstratesthe potential of approaching the shift inhealthcare from an experience designviewpoint.The outcomes are presented as a servicelandscape. Within this framework keylife stages are mapped against healthneeds and opportunities for developingsocial networks to address them. This issupported by scenarios – eight narrativesare illustrated in this report – suggestinghow this landscape can be mined for newservice opportunities linking private, publicand voluntary sector organisations in newpartnerships.BenefitsIndividuals already create their own wellbeingstrategies with the help of family,friends and work colleagues before going tothe doctor. This model offers the possibilityof support platforms to encourage thesesocial health networks.For network providers, the model canbe used to develop services which arecloser to the consumer at key life stages.The social value of these services willbuild brand loyalty by fostering a sense ofpartnership between service provider andcustomer at key points in the life course.For retailers and medical product companieswho make up the supply chain, there arebusiness opportunities in understandingand meeting the needs of consumers whoare responding more proactively to their

Executive summary Executive summary Executive summary Executive summary Executive summary Executive summary Executive summary Executive summary Executive summary Executive summaryown health needs. Circles of Care impliesa move beyond self-monitoring and selfdiagnosisproducts, which has grown rapidlyin recent years.For voluntary sector organisations, theopportunity to build a partnership with anetwork provider as part of a social networkcan extend their role from fund raiser toservice enabler.For the NHS, the study shows how growingnew social models of well-being couldbecome an important adjunct to the existingsystem.A beginningNew service concepts support a socialnetwork of care at different life stages.These will emerge by exploring thelandscape in more detail with the differentplayers who could enable them.The Circles of Care concept approacheshealth as a social activity and marks thebeginning of a healthcare system based onsocial networks in which individuals take anactive role in their health and the well-beingof those close to them.The service narratives aim to createconversations about the opportunitiesfor all the different public, private andvoluntary sector players. In this contextthe designer can take the role of mediatorbetween the players, making all aware ofevolving user needs.

10°11

IntroductionCure or prevent?The crisis of healthcare systems is anongoing issue, especially in Europeanwelfare states. In the UK we currently havea system where we wait for people to getill before we treat them. The British healthmodel is still based on cure, by destroyingthe sickening force. The ideal patient followsthe expert’s instructions without dispute.This is similar to a child’s health being thefull responsibility of its parents.However, people are now becoming moreresponsible for maintaining and monitoringtheir own bodies. Hence the growingmovement towards self-care and personalwell-being. Increasingly we look to socialnetworks of support before going to thetraditional expert system. But this socialnetwork currently receives little attentionfrom design and industry.How are you?As individuals, we are becomingincreasingly proactive with regard to ourown health. How can products and servicesaddress this?Developments in information technologycan give individuals more opportunities toinform themselves about health issues.The use of internet, mobile technologies,self-test biomedical products and genetictests are just a few examples of newtechnologies that can help individuals create

12°13Introduction Introduction Introduction Introduction Introduction Introduction Introduction Introduction Introduction Introduction Introduction Introduction Introduction Introduction Introductionand sustain their own personal healthcarenetworks."According to recent studies, 52 millionAmericans, or 55 per cent of those withinternet access, use the internet for healthand medical information. Half of thesepeople say the information they garner onthe web has improved the way they takecare of themselves, and 36 per cent say ithas affected their decision on behalf of aloved one." (Zuboff S, 2004)These trends suggest that people want tolive their lives more proactively, particularlywhere health is concerned.Designing for social networksWhen looking at new markets, oneimportant challenge is to consider thelong-term effects on behaviour and thedifferent service opportunities thatmight evolve as a result.The designer's role is to consider thislong-term relationship between users andservices and bring it to the attention of thevarious parties involved (such as business,public sector and the general public).For that reason, the research approach issited in the field of experience design andservice design. Experience design dealswith how products are experienced overtime. Service design deals with how theseexperiences are organised within networks.

These trends suggest that people wantto live their lives more proactively, particularlywhere health is concerned. >New, proactive health consumers neednew platforms to support them. How doesthis research investigate these new socialnetworks?First, it investigates the differentstrategies and experiences of usersbuilding their own social networks ofhealth, and sets out the concept ofCircles of Care to identify these strategiesand experiences. Second, it proposesa complimentary healthcare model orlandscape where user strategies andexperiences can be supported, for instanceby emerging technologies. The conceptof Service Narratives is used to envisionthis new health landscape. Circles of Careand the Service Narratives within, providethe framework for designing for socialnetworks of health.In this project design is used as a researchtool - as a way of creating awarenessof new social trends, and as a way ofanswering questions about technology,how we perceive it and how we can benefit.

14°15ResearchThe research mapFour different areas were explored toinvestigate the proactive health consumer:Current health modelsPeople inspired designCommunication technologiesCross-culture inspired designCurrent health modelsThese were examined by comparing thewestern health model of cure (responsive)and the eastern health model of care(proactive). For example, the Indian orChinese model is based on prevention bystrengthening the vitalising forces. Thedoctor serves the patient and the patientis active and instrumental in his or her ownhealth. In most western health systems,the medics are waiting for people to get ill.This area was studied through literature(sociology books, articles and internet) andmedical expert interviews.People inspired designThe study began with an analysis ofindividual attitudes to maintaining healthby focusing on a group of ten peoplebased in the UK (aged 20-40). They hadrecently moved to a new town or country,necessitating the creation of a new circleof care. This was extended with ten morepeople between 40-65 year of age whohave not moved recently.Communication technologiesThe research explored how newcommunication technologies can play arole in building this personal healthcarelandscape. For example, people wereinterviewed about what technologies theyuse for their health routines. They wereasked if they have any self-diagnosisproducts at home, if they use the internet,or any other technology to check on theirhealth issues.Cross-culture inspired designTo compare attitudes to health in differentcultures (design ethnography), the researchwas extended by interviewing fifteen morepeople in Italy and India. Italy was chosenbecause of its strong family networks; Indiabecause of the interesting mixture ofalternative health systems alongside themainstream systems.The main research questionsHow do people maintain their health?What kind of prevention routines exist?What sort of networks do people have?How do these differ between cultures?

This desire for choice within a broaderspectrum of health systems is a growingmovement in the UK. >Why design ethnography?This cross-cultural comparison wasused to construct a design ethnographyinterrogating individual attitudes to health.It gave not only an insight into their culturalview of themselves, but also indicatedlarger social changes.For example, it was apparent that peoplewhose background is from a morecollectivist culture, like Asia or Italy,naturally kept in touch with family, and usedhome remedies or alternative medicines aspart of their well-being routines. This desirefor choice within a broader spectrum ofhealth systems is also a growing movementin the UK and North America. A study inthe Journal of the American MedicalAssociation found a 47 per cent increasein the total number of visits to alternativemedicine practitioners between 1990 to1997, from 427 million to 629 million. Thiswas also found to be widely distributedacross all socio-economic groups.people think, feel and do (Diener E, 2003).Showing what appears to be so natural andjust taken for granted, in any culture-specificcontext can form the basis for designingnew systems and services.This ethnographic observation bringssignificant stimulus and insight to thedesign process, extending beyond thatbased on personal speculation or statisticaldata.These ideas from other cultures, abouthealth and maintaining well-being, werefed into the project inspiring new modelsof interaction.This design process of using ethnographicdata to generate new technology andbusiness ideas is also called 'ethnographicimagination' or 'contextual invention'(Hewlett Packard, 2003). The challenge is tomake explicit the assumptions, premisesand narratives that are hidden beneath what

16°17arn your illness symptomsChanges in your dietInvestigating family’s pastmain activators: FAMILY, FRIENDSStaying in touch with your family FAMILYCARINGMoving

Research Research Research Research Research Research Research Research Research Research Research Research Research Research Research Research Research Research Research ResearchDisplacementDisplacement was used as a critical factorto identify people who developed newCircles of Care out of necessity. PeopleMoving to another city or country, travellingfrequently or commuting between workand home were considered as experiencingdifferent forms of displacement.The main research toolsExpert interviews with traditional andalternative medics and sociologists.User interviews were conducted to measureindividual attitudes to health.Workshops with designers were held todiscuss new approaches in depth.Using film as an inspiration to envisionfuture health systems.Expert interviewsFive health centres and five Doctors werevisited in the UK, India and Germany. Allwere asked about their personal and professionalview on health, in four specificareas: the benefits of their practice andapproach; the shift in healthcare; therole of technology in healthcare; the roleof proactive health consumers. Whereappropriate, their facilities and approacheswere evaluated and documented firsthand. A selection of interviews is documentedbelow.Example oneA renowned Aryuvedic medical healthcentre in Bangalore was visited. The headdoctor was interviewed and his facilitieswere documented in detail. He had 25 yearsof practice experience. His patients (whohe described as customers) were from andincluded both families and individuals. Heexplained that his Ayurvedic practice wascomplementary to other medical systemsbut the main difference is it offers two kindsof treatments: wellness care and illnesscure. It encourages wellness care andadvises people to lead a proactive lifestyle.InsightThis ilustrates the shift in viewpointbetween east and west, from responsivecure to preventative care through holistictreatments.Example twoA General Practitioner (GP) in Germanywith 30 years of practice experience wasinterviewed. His patients included all agegroups. He stated that the rise in access tomedical information through internet healthsites was a nightmare vision for him. In hisview 'pseudo expert' users create morepressure for medical professionals, sincethey do not have to rely on them fordiagnosis and do not take everything theyare told for granted.InsightThis illustrates how patients go to theirdoctors more informed (or disinformed)about their health problems than everbefore.

18°19"I make my workmatesgo to the gym with me.""Health is being in contactwith the people I love.""My brother and me arefood freaks."Example threeA GP in London with 20 years of practiceexperience was interviewed. His patientsincluded all age groups. He stated thathis patients are mainly passive and he triesto inform them with leaflets and adviceto a more preventative life style. Hewelcomed the change in access to healthcareinformation to help the overloadednational health system. For instance herecommends patients with repetitive straininjuries (RSI) to initially check a websiteset up by a self-help group, www.rsi.co.uk.He asks them to only come back to him ifthey do not get suitable help from there asthe waiting time for the physiotherapist iscurrently nine months.InsightThis shows that medical experts use newways to access healthcare information andare encouraging people to be more active.User interviewsThe initial group consisted of peopleaged 20 to 40 who had recently moved toanother city necessetating the constructionof a new circle of care. This was extendedto include another sample group of peopleaged 40 to 65 years old. In all, 20 people ofdifferent nationalities within the UK and 15people in India and Italy were interviewedto compare cross-cultural approaches.People were asked to give their personalviewpoint on four areas to do with health.Short films were made from the interviewsand used as a tool to illustrate the Circles ofCare concept.The first area addressed their generalattitude to health. People were asked:"How would you define being healthy?""Do you have a routine to prevent illness?"The second area interrogated personalhealth strategies. People were asked, forexample:"What do you do for your daily well-being?""What do you do when feeling unwell?""Who do you speak to?""What do you eat or drink?"

"I drink warm water everyday.""I started drinking lesswhen she was pregnant."The third area investigated primarymotivators for routines. The intervieweeswere asked:"What motivates your health routines?"The fourth area looked at the use oftechnology in health issues. For exapmlethe participants were asked:"Do you check or treat yourself forsomething regularly?""How do you check it?""Do you use the internet for healthmatters?"Interview insightsThere were two initial reactions to healthconsciousness:"I am not health conscious." Although onegroup of people initially denied being healthconscious during the interview, it becameapparent that they all had a certain healthroutine and also a circle of care, even if theywere not fully aware of it."I am very health aware." These peopledirectly mentioned a specific health-relatedstrategy or routine:An eating routine, such as eating "colourfulfood" and "self-cooked meals" to ensure agood balance and quality.A physical routine, such as going to thegym several times a week, yoga or "runningwhen feeling down".An emotional reassurance routine, such astalking to family or friends regularly.Their answers also highlighted otheraspects. For example, education, familyhabits and cultural background wereimportant. Disruptions such as moving orillness were seen as primary motivatorsfor a change in health routines. Almosteverybody had strategies to avoid visitingthe doctor and relied on advice fromother people instead. In this case, trustwas an important factor. Healthy friendsencouraged a healthy routine.Most people had the equivalent of 'selfcaremanuals', practices and prescriptionsdeveloped over the years from their ownexperience and networks.

20°21Workshops with designersDoors of Perception (Bangalore, India)The first workshop brought together tenservice designers, product designers,technologists and social scientists to lookat how people maintain health and whattechnologies are used.Interaction Design Institut (Ivrea, Italy)The second workshop was joined by 20students and five senior design researchers.This looked more specificly at servicedesign and designing for communities inthe context of healthcare.The key words that emerged from bothworkshops were control, responsibility,trust, motivation, holistic, change in life.The importance of an individual's self-helpmanual was emphasised again.Research partners (London, UK)A workshop with four senior designersof the medical product innovation team atPearson Matthews, the internationalresearch manager from Orange and tworesearchers from the Helen HamlynResearch Center discussed the Circlesof Care concept in depth.require different circles of care. Participantscould identify with, for instance, being thehead of the family where the health of thefamily as a whole is the overriding concern.Film as envisioning toolFeature films were used as an inspirationto envision future health systems and topresent concepts about healthcare in anarrative way. These stimulated discussionsat the beginning of the project and wereused to demonstrate what a circle of carecould look like.'Gattaca' (Andrew Niccol, 1997) was usedto illustrate an extreme future of genetictechnology and its social implications.'Fight Club' (David Fincher, 1999) was usedas an example of a society with extremeself-help groups.'Memento' (Christopher Nolan, 2000)illustrated radical survival strategies foreveryday life when dealing with a chroniccondition.'Amelie' (Jean-Pierre Jeunet, 2001) waschosen to show disruption in everyday life.The participants took part in an exercise toreveal their individual circles of care usinga cultural probe. They were invited to drawon a rubber glove, describing the people,objects and strategies related to their ownwell-being. (see page 20)This exercise made everybody explicitlyaware of their own health routines. Themain insight was that different life stages

The research identified a need to revealunarticulated consumer concerns and createways to talk about and share them. >Research Research Research Research Research Research Research Research Research Research Research Research Research Research Research Research Research Research Research ResearchConclusionsPeople create their own self-care strategiesand increasingly rely on personal supportnetworks before or after going to thedoctor. People have circles of care but areoften not aware of them.The space between self-care and expertmedical care needs more attentionfrom service providers, designers and otheragencies.The research identified a need to revealunarticulated consumer concerns, andcreate ways to talk about and share them.The design response is presented as a newlandscape of care: a map of interrelatedcircles of care, extending through the lifecourse and centred on key stages and lifeevents.

"Imagine your hand is a blank map of your circles of care. Where are your healthy things,people, objects, strategies, disruptions, motivations ? Take a pen and drawyour circles of care on the next page."22°23Draw yours Draw yours Draw yours Draw yours Draw yours Draw yours Draw yours Draw yours Draw yours Draw yours Draw yours Draw yours Draw yours Draw yours Draw yours Draw yours

DRAW YOUR CIRCLES of Care!

24°25the medical expert spacethe CIRCLES of Care spaceself-monitoring productss of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circlthe self-care space

government NHS private healthcare patientes of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circself-testmain activators: PARTNEROTC over the countermain activators: FAMILY, FRIENDS, LOCAL HEALTHactiveThe landscape of careThe research takes three spaces of care:the self-care space, the medical expertspace and the Circles of Care space.Self-care is the closest space to one'spersonal health. In the self-care space,self-monitoring devices and self-diagnosiskits are used to keep track of your healthconditions like diabetes.At the other end, is the medical expertspace where public and private healthinstitutions, like the national health service(NHS) sit.Circles of Care is the space inbetweenself-care and the medical-expert space,where people are creating their ownwell-being strategies. In your circle ofcare your partner, family, friends andneighbourhood help you to maintain yourdaily health and well-being.These personal well-being networks areconstructed from a person’s experienceand contacts. These experiences heightengeneral awareness of health and requiregreater levels of support, especially ingrowing a social network of personalcare.These social networks of personal care arethe Circles of Care.In the following pages the Circles of Careapproach is explained using the concepts ofrelatedness, life events and activators. Theoutcome is a map of the Circles of Carespace, which illustrates this new landscape.Circles of Care are based on relatednessThe first phase of the project revealed thateveryone has three universal requirementsto support their own health.Physical (your body):"I like the way it makes me feel whenworking out or eating healthily."Autonomy (your mind):"Health is having control over my life, being

The gym as a family concern. Health is seen as a part of your social network and notas a single activity. Picture taken in Bangalore, India.26°27Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care Circles of Care

Receive Circles of Caremain activators: FAMILY, FRIENDSmain activators: PARTNERChildhood Moving Marriage Pre-Babymain activators: FAMILY, FRIENDS, LOCAL HEALTHConstruct your Circles of careAdapt your Circles of Care to another person’s28°29Circles of Care and life eventsAn individual's own culture and experienceemerged as central to constructingstrategies to support well-being. Your socioculturalbackground, family, education,friends and also disruptions in your routinessuch as illness, moving, ageing and havingchildren, all influence your circle of care.These factors can motivate you to takeresponsibility for your daily health.able to do what I want to do."Relatedness (your social network):"Health is being connected to people I trust,the feeling of being supported."People search for control (autonomy). Thistendency of wanting control is seen veryclearly in the rise in the number of peopleusing self-care products to monitor anddiagnose themselves in their own homes.These self-care products are often boughtbecause of a recommendation fromsomeone trusted, who has used it before.This need for trust is a given in building asocial network (relatedness) and is the maindriver for constructing personal circles ofcare. For example, a sporty family member,a 'health freak' friend, or a workmate mayinfluence your health strategies and sobecome part of your network of health.The research identified six different stagesor life events where circles of care changeor evolve. These stages are the mainmilestones of receiving, constructing,adapting, sharing and passing on one‘scircles of care.Childhood: you are mainly dependent anda receiver of others‘ circles of care.Moving: any period of moving to live inanother place implies that one has to buildnew circles of care.Stimulating, extending and supporting socialnetworks of health that are based on trustbecame the central focus of this research.

main activators: COLLEAGUESmain activators: YOUR CHILDRENWork Head of the family Growing oldShare your health activities with othersPass on your Circles of careReceive Circles of CareMarriage + pre-baby: in this specific lifeevent you have to adapt your circles ofcare to take on other people‘s networks forexample your partner. This became evidentin the inteviews when both partners "got fittogether for marriage" and when she waspregnant, her partner also started to drinkless to motivate them both.Work: work colleagues and social relationswithin the workplace are an important partof our circles of care. At work, people‘sroutines and well-being strategies are oftenshared (ways of avoiding repetitive straininjury or back ache) with colleagues.Head of the family: becoming the head ofa family means taking on responsibility forother people and passing on circles of careto the whole family.Growing old: as you grow older your circlesof care become more dependent on otherpeople and external agencies.

30°31Circles of Care ActivatorsCircles of Care Activators are people whocan play an active role in your circle of care.These include your family, partner, friends,neighbourhood and work colleagues, amongothers.Main activitiesOur individual health and well-beingdepends on building and maintaining circlesof care. The main activities are to motivateand to activate health routines and also tomonitor and screen your health.FAMILY CARING: the family memberstake care of each other. Children monitoringtheir parents and parents motivating theirchildren are examples of activities withincircles of care.a relationship of trust.Peering: colleagues who share the samework routines and similar health conditions.Hay fever or RSI are chronic patterns thatcreate peering networks of help.Neighbourhood health: the area whereyou live plays an active role in your healthroutines.Map of the Circles of Care spaceThe map on the next pages shows a moredetailed network of care points, basedaround health activities, which provide alocal and people based network. Servicescan create a supporting structure aroundthe individual. There are opportunities foreach life event.PARTNERING: partners motivate andmonitor each other because they sharetheir circles of care all the time. This activityincludes monitoring each other's diet,exercising together and managing stresslevels or mood.Friends Coaching: friends motivate eachother in a reciprocal way. Certain routinesthat require extra motivation, like goingto the gym regularly show how friendscan create networks of health coaching.Semi-expert friend: groups of friendswho can deliver semi-expert adviceabout a health problem on the basis ofChildhood

PARTNERINGSouthernItalian wifeadjustingyour dietvegetariangirlfriendgettingtonedgetting fitfor marriageskin,hair,teethstopcyclingdrinklesssupportpregnancyFAMILY CARINGfamilyhelp andadviceeabemain activators: PARTNERmain activators: FAMILY, FRIENDS, LOCAL HEALTHMarriage Pre-BabyAdapt your cirlce of care to another circle of care

CONSTRUCTProducts and services that helpbuilding your Circles of CareADAPTProducts and services that help youadapt and maintain your Circles of Care32°33Receive Circles of CareChanges in your dietLearn your illness symptomsInvestigating family’s pastFriends become familyHEALTH HERITAGE BLOGCALL MUM FOR FREEmain activators: FAMILY, FRIENDSStaying in touch with your family FAMILY CARINGConstruct your Circles of CareSouthernItalian wifevegetariangirlfriendPARTNERINGadjustingyour dietTWOWEIGHgettingtonedgetting fitfor marriagemain activators: PARTNERskin,hair,teethstopcyclingdrinklesssupportpregnancymain activators: FAMILY, FRIENDS, LOCAL HEALTHfamilyhelp andadviceAdapt your Circles of Care to another person’sFAMILY CARINGChildhood Moving Marriage Pre-BabyNEIGHeatingbetterMap of the CIRCLES of Care space

SHAREProducts and services thatencourage to share your Circles of CarePASS ONProducts and services that support you beingresponsible for your family’s Circles of CarePEERINGHAY FEVER ALERTshare sameallergieshealth tipsover lunchMOB-CARDSFAMILYCARINGworkingabroadGHBOURHOOD HEALTHgymtogetherFRIENDS COACHINGresponsibility for kidscycle 20minto workmore awarenessof own healthdeath of parentsmain activators: COLLEAGUESmain activators: YOUR CHILDRENcaretaking ofin-lawsWork Head of the family Growing oldJOHN PUT LESS SALTShare your health activities with othersPass on your Circles of CareReceive Circles of CareBig life eventsKey Big to the life map eventsHealth experiencesHealth experiencesBig life eventsStages of your life where the Circles of Care chStages of your life where the Circles of CareHealth and wellbeing experinces from the reseHealth and wellbeing experinces from the resACTIVATORS ACTIONSThe activators are people who cACTIVATORS ACTIONSan The active activators role in your are people Circles who ofan active role in your Circles oHealth FAMILY experiencesFAMILYCARING Famliy members take care of eaFAMILYHEALTH FAMILYCARING HERITAGE Your Famliy family members health routines take care are of iACTIVATORSPARTNERFRIENDS PARTNERPARTNERINGHEALTH HERITAGEFRIENDSCOACHINGPARTNERINGPartners Your family motivate health and routines monitor areeFriends Partners motivate each and other. monitoLOCAL FRIENDS AREA POSTCODE FRIENDSCOACHING HEALTH The Friends local area motivate is active each in other. your hACTIVITIESWORK LOCAL AREA PEERING POSTCODE HEALTH Colleagues The local area share is health active activitie in yourWORKPEERINGColleagues share health activiAREA FOR SERVICE AND PRODUCTSERVICES AND PRODUCTS AREAOPPORTUNITIESSERVICES AND PRODUCTS AREASERVICE EXAMPLES (SEE THE SERVICE NARRATIVE CHAPTER)SERVICE SERVICE NARRATIVESEXAMPLES (SEE THE SERVICE NARRATIVE CHAPTER)

34°35HEALTH as a social activity

The Circles of Care model and the ideaof health as a social activity explore anarea previously unnoticed by most ofthe western health systems – yet it isexperienced to greater or lesser extentby individuals within these countries.The research suggests that most peoplehave some form of supportive network,"spheres of support" or Circles of Care.These circles are not solutions for healthbut networks that have to be built, sharedand maintained. The framework where thewell-being strategies take place is socialactivities, for example, friends coachingor partnering. These networks are built ontrust and the research identifies differentactivators of trust in different life events.as a social activity with the building ofnetworks of trust. This is significantlydifferent from self-care models, whichresult in self-monitoring and self-diagnosisproducts for solitary use.The central feature of the Circles of Caremodel and health as a social activity, isthe network. The network is key and is, ineffect, the product of the service. At themoment, healthcare systems are improvingthe delivery of solutions to problems, butthis new model provides a "support space"before the problems arise and the capacityto respond when they do.The key to opening up opportunities forthese networks lies in understanding whathealth means at a personal level. Risinghealthcare costs and a shortage of staff,combined with users becoming more andmore demanding, are all creating a financialburden on conventional healthcare servicesand the NHS. This is where services thatsupport Circles of Care at a consumerlevel can offer significant benefits.This is especially so with networkedtechnologies, where the value comesthrough connectedness and sharing. As aconsequence, such services can play animportant role and respond to changing userdemands.What is proposed is a people-centredapproach to healthcare, combining health

36°37Who will play a role?The Circles of Care model is based onexisting networks around which newservices can encourage us to build, share,adapt and pass on to others knowledge,experience, support and concern. Who willplay a role in providing platforms to enablethese?TechnologyTo discuss the role technology can play insupporting health networks we can taketwo future scenarios of the development oftechnology, classified by sociologist JamesRobertson.One model takes technology as a solutionfor everything – technology as master.In this future, medical technology will solvemost health problems, but it will increasethe dependence on medical experts andtechnologists.There are several digitalhealth services, that follow this approach.For example, many self-care projects whichuse sensors to collect your biomedicaldata treat health as pure data and oftenonly deliver stockmarket like charts ofinformation which ignore the social andcultural dimension of your health.Another scenario takes the use oftechnology as a servant. This foreseesthat greater responsibility for health willlead people to the proactive cultivationof their health and to the positivepromotion of a healthy physical and socialenvironment. In this model, personal selfhelpand cooperative mutual aid in mattersof health and sickness will be more highlyrated than dependence on the expertise ofhealth professionals.To date, far less work has been doneon treating health as a social experience– starting from the bottom up withexperiences and social context – than ontechnologies and digitized data. This is asignificant gap, but also an opportunity toexplore the potential benefits of new andemerging technologies.StakeholdersIn this model, the 'conscious well' play therole of the active health consumer. Theyare the people who are concerned with andaware of their health on a daily basis. Thesehealth consumers will be more proactive,more informed and more demanding aboutproducts and services for daily well-being.They will be more networked to theirpartner, relatives, friends and local area,and will actively seek well-being and healthylife styles.Today, people spend a significant amount ofmoney on what they see as health support,such as vitamins. Such people will also bemotivated to invest when they realise thathealth lies in Circles of Care. The marketof healthy people who want to be morehealthy is much larger than the market ofhealthy people who fall ill.

The designer will play the role of the mediatorbetween the 'conscious well' and the serviceproviders. >"By 2000, it was estimated that Americanswho use alternative health care spend about$500 out of pocket annually. The market fornutritional supplements was estimated atbetween $92 billion and $200 billion. Smallwonder that 70 per cent of consumers toldpollsters that availability of alternative carewas a top criterion in their choice healthplan." (Zuboff S, 2003)Communication technology companiesplay the role of the well-being serviceproviders in this model. Apart from businessnetworks and personal communications,these companies will provide platforms forhealth and well-being, creating newnetworks around our Circles of Care. Theywill be closer to their customer becausethey meet social needs. These companieswill also include in their brands the idea ofbeing 'health conscious'.Product retailers from food to clothingalready address the self-care healthconsumer. They will answer to the growingmarket of the Circles of Care demand.This network of health is the new customer.The important factor for such retailers isthat they can think of consumers asgrowing peer groups with whom they candevelop lasting relations. Consumer feedback can be very direct, leading to productimprovement, support and extentions thatincrease loyalty. This defines new ways ofthinking about brands, that have a wideremotional and social value than individualproducts can deliver.Medical product companies canincorporate the Circles of Care conceptinto their product strategy to reach a widermarket.The service around the productadds to its social value and can be acritical success factor in the global market.Similar factors to those affecting retailersapply here and the potential for closerrelations between producer, retailer andconsumer offers opportunities for newmarkets, supported by communication andinformation technologies.Designers will play the role of mediatorsbetween the 'conscious well' and serviceproviders. Involved right at the beginningof any new product strategy, the designer‘stask will be to envisage services andassociated products that can respondand adapt to changing user needs andlife stages.Voluntary sector organisations are alreadyclose to people and can, in partnership withnetwork providers, become enablers ofservices by bringing expertise and theimportant 'trust factor' to the consumer.They will benefit from the opportunity toreach out to larger numbers of people inmore effective ways.The public sector will not find itself incompetition with the networked-centredhealth system, but will be able toconcentrate on delivering highly specialistmedical services while benefiting from theopportunity of working in close relation withvery local community based networks.

38°39Service narratives Service narratives Service narratives Service narratives Service narratives Service narratives Service narratives Service narratives Service narratives Service narratives ServiceSERVICE narrativesCircles of Care Services ©Four ongoing case studies and eight servicenarratives are explained in the followingpages to illustrate how communicationand networked technologies can provideplatforms for social networks of health.These services aim to encourage proactivehealth routines.Case studies:PatchItUp allergy monitoring patchesby Pearson Matthews show how aself-monitoring device and mobilecommunication can incorporate Circles ofCare. It is a wearable allergy sensor forchildren that alerts the child and its circleof care member if an allergic reaction isoccuring.Sweet Talk by Orange is an example ofusing sms technology and peering tomotivate and monitor daily health routinesamongst a group of diabetic children.Thechildren and the doctor are part of an smsnetwork which enables them to send dailysupport messages and allows them to askquestions via sms.Eye coach by Gero Grundmann, HelenHamlyn Research Associate 2004 withGuide Dogs for the Blind Association is anexample of the voluntary and private sectorteaming up to provide a proactive healthservice based on people‘s existing networkof care. The Guide Dogs charity providesactive learning cards for gym instructors,so that they can encourage gym visitors to

The service narratives are presented asinspirational scenarios for service companies,designers and consumers. >take care of both their body and their eyesight.Change to Prevent by Teko designconsultancy for Bayreuth Breast Cancer inGermany is an example of a clothes retailerand a medical expert providing a proactivebreast cancer prevention service inchanging rooms. This takes an existing pointin a social network of care to encouragehealth monitoring. The project useschanging rooms, where women alreadydiscuss their emotional and physical health,to remind them to test each other for earlysigns of breast cancer.Service narrativesThe following pages introduce eightservice narratives that respond to a networkof care. These services and products arescenarios that set up a situation whereCircles of Care meet a service. They arebased on personal stories of individualswho experience a change in their circle ofcare (displacement, moving, loss ofpartner).These points of contact with the serviceare where its value shows, unlike productswhere the value lies often in possessionnot use. At present the service economyis a culture of use rather than a culture ofpossession.The service narratives address the healthactivities previously defined with thedifferent activators of the Circles of Care,like partnering, friends coaching, orneighbourhood health. The narratives evolvearound main life events that have a strongimpact on building, adapting, sharing orpassing on circles of care.These narratives are presented asinspirational scenarios for servicecompanies, designers and consumers tocontextualise how Circles of Care servicescan be designed.Each service is illustrated at a momentwhere it is experienced by the user. Forexample, when using it, when receiving aletter from the service provider or whenjoining. Lets take the service of a bankaccount as an example: most of the timeit is in the background and we experienceit when we take out money or when wereceive our statement telling us how muchinterest we have made, or have not made.

Call mum for free ©William Brooks has moved to another city to start a degree in electronics at the university.It is the first time he has lived away from his hometown. He will learn a lot of about resistorsand transistors. He will learn how to take care of himself too.Will got a letter.40°41LIFE EVENTCIRCLE OF CARE STAGEACTIVATORSSERVICE DESCRIPTIONCONSUMER BENEFITSERVICE PROVIDER BENEFITTYPE OF COMPANYFUTURE POSSIBILITIESLONG TERM STRATEGYMovingBuild a circle of care for the first timeHis family: he still depends on his family‘s circles of careFree call to your mum for 15 minutes, every Monday for one yearCalling mum for freeEnhance communication between William and his familyHelp to create a circles of careGet closer to the consumer’s personal networkAugment the frequency of customer communicationCommunication companyTone of voice recognition database to identify changes in user wellnessIntroduce the 'health conscious' brand to a wider audience

Health heritage blog ©Bernard has been offered a job abroad. His younger sister is already studying in another city.Bernard thinks it is good to work away from his hometown for a while but his girlfriend iswaiting for him to come back. Bernard and his sister want to collect the knowledge from theirparents self-care strategies (cooking recipes, home remedies, first illness symptoms). Thisknowledge will activate their self-care routines even though they are miles away from home.They don't know how to collect this family data.Bernard and his sister have a solution.LIFE EVENTCIRCLE OF CARE STAGEACTIVATORSSERVICE DESCRIPTIONMove citiesDiscover and document his family's health heritageHis sister: she is in the same situationCONSUMER BENEFITSERVICE PROVIDER BENEFITBlog space to collect strategies of health and well-being of a familyLearn how to build his circles of care to stay healthyTYPE OF COMPANYFUTURE POSSIBILITIESLONG TERM STRATEGYCloser involvement with the consumer and his/her familythrough offering a 'family' serviceHealth and well-being product retailerCreate a database with the customer’s health routinesOffer 'life-long' services, encourage customer loyalty

SERVICE PROVIDER BENEFITIncrease contact with his daughtersDad sent a mob-card ©Julian Moore is 38, married and has two young daughters, Sara and Isabel. He travels to Switzerlandonce a month on business. He used to enjoy a good fondue as well, but Julian has highcholesterol and now he can’t eat very fatty meals. He knows that. His daughters know it too.His family got postcards from him.42°43LIFE EVENTCIRCLE OF CARE STAGEWork abroadACTIVATORSShare his circles of care with his daughtersHis daughters: they monitor what he eatsSERVICE DESCRIPTIONCONSUMER BENEFITJulian can send a postcard home with a picture taken by his mobileHis daughters have a platform to monitor his health when he is awayIncentive to keep a healthy routine when travellingClose identification with the consumer’s personal networkTYPE OF COMPANYBuild an emotional relationship through a networkLONG TERM STRATEGYCommunication companyCreate 'warmer' technologies for a specific context of communication

John, put less salt ©John and Margaret have lived together for a very long time. John is 67 and retired from therailway company two years ago. He has high blood pressure and has to take care with saltymeals. Margaret was a housewife. She always monitored John‘s meals putting, less salt intothe cooking. Last year Margaret died of colon cancer. There is no one to monitor John‘s saltintake.John got a present from his niece.LIFE EVENTCIRCLE OF CARE STAGEACTIVATORSSERVICE DESCRIPTIONLoss of a circle of careRebuild a circle of careHis familyCONSUMER BENEFITSERVICE PROVIDER BENEFITPersonalised objects that resonate circles of care from the pastObjects to help him remember healthy routinesTYPE OF COMPANYLONG TERM STRATEGYReach a new market that merges personal experiences with objectsProduct designer, retailExpand product range

SERVICE PROVIDER BENEFITHay Fever peer alarms ©Claire, Mark, Susan and Joel work in the same insurance company in the West End. They arein different departments but usually meet in the canteen. They are in their mid thirties and liketo talk about how they feel. They usually exchange healthy tips during lunchtime. They all sufferfrom hay fever.Joel sends an alert on his way to work.TYPE OF LIFE EVENTCIRCLE OF CARE STAGEAlways at work44°45ACTIVATORSShare circles of care in a peer groupSERVICE DESCRIPTIONWork colleaguesSystem that enables to send sms alerts to work colleaguesCONSUMER BENEFITwhen the first symptoms arise'Real time' location-based awareness of allergy riskSupport wellness at work and have more control of hay fever allergiesCreate networks based on health conditionsTYPE OF COMPANYReach groups of people thus increase frequency of communicationLONG TERM STRATEGYMobile companyBe perceived as 'community' supporting brand

Count on us too © RetirementPeter is 69, retired and very opinionated. For example, he always complains about the healthservice in his country. He thinks that is doesn’t work. He thinks that the government is waitingfor him to get ill to do something, but in the meantime they don’t care about how he takes careof himself.Peter smokes a lot and today smiled about the pack of cigarettes.TYPE OF LIFE EVENTCIRCLE OF CARE STAGEACTIVATORSSERVICE DESCRIPTIONCONSUMER BENEFITHEALTH SYSTEM BENEFITTYPE OF COMPANYLONG TERM STRATEGYNeeds a circle of care to quit smokingFamily or friendsTobacco warnings that address family and friends as main activatorsCatalyst to ask for help from family and friendsHealthier and more responsible populationConsumers refer to family and friends for personal health mattersHealth system (NHS)Long term education, reduce strain on health systems

Who gained weight ? ©Today Sarah and Tim weighed themselves on their bathroom scales together. It shows half apound more since the last time. It was him who gained weight? Or it was her? Or both?Today they were very quiet at breakfast.46°47LIFE EVENTCIRCLE OF CARE STAGEACTIVATORSPRODUCT DESCRIPTIONCONSUMER BENEFITCOMPANY BENEFITTYPE OF COMPANYLONG TERM STRATEGYLive togetherShare circles of carePartners, motivating each otherBathroom scale that encourages controlling weight togetherMotivate and monitor each otherExpand product rangeProduct manufacturers, retailCreate products with a social and well-being function

My healthy postcode ©Alice sometimes has low immune levels. She does blood analysis regularly and she has tocontrol what she eats. She also wants to be healthy for next summer because her best friendis getting married and she wants to look great. She read on the internet that zinc is good forthe immune system. She is too lazy to check which products contain zinc.Her supermarket will check for her.TYPE OF LIFE EVENTCIRCLE OF CARE STAGEACTIVATORSSERVICE DESCRIPTIONCONSUMER BENEFITSERVICE PROVIDER BENEFITTYPE OF COMPANYLONG TERM STRATEGYTemporary condition (immune system low)Build a circle of careHer neighbourhoodPersonalised supermarket bill that indicates amount of specific food componentsExtra information helps her to control her zinc intakeCloser understanding of the customer needs and health problemsSupermarket chainsIncrease customer fidelity to the supermarket by offering a personalised service

48°49CONCLUSION: where next?

Conclusion Conclusion Conclusion Conclusion Conclusion Conclusion Conclusion Conclusion Conclusion Conclusion Conclusion Conclusion Conclusion Conclusion Conclusion Conclusion ConclusionThis report has introduced a new conceptcalled Circles of Care which describes anapproach to healthcare based on socialnetworks.In looking at how people maintain theirhealth, the study has identified an‘inbetween’ space between self help andthe expert help of medical professionalsthat has potential for development.and populate the inbetween space throughcase studies and realised design proposals.In this way, Circles of Care will easepressure on existing medical services,achieve social inclusion aims and offerbusiness opportunities.This area has been identified using designethnographic research techniques toinvestigate displaced people moving to anew town or country, who have beenforced by necessity to construct a newcircle of care.A map of the inbetween space has beencreated showing how Circles of Caresupport people at different life stage.A suite of service narratives have beendeveloped to illustrate the concept andgenerate a debate on how the map couldbe populated with new services in thefuture.As the project took shape, the drivingquestion became: what kind of Circles ofCare can be identified and evolved, andwhat new services are needed to sustainthem?Now at the conclusion of the study and theestablishment of its central proposition, itis important to mark a new beginning. Thenext steps following the publication of thisreport should be to forge new partnerships

50°51BibliographyArnold K (2003) Medicine Man, British MuseumBettie A, Gott M (1993) Health & Well-being: aReader, The Open UniversityBoon T, Jones I (2003) Treat yourself, ScienceMuseumBoon T, Lawrence T (1994) Health Matters,Science MuseumBrown J S, Duguid P (2002) The Social Life ofInformation, Harvard Business SchoolDepartment of Health (2003) Design for PatientSafety, Design CouncilDiener E, Suh E M (2000) Culture and SubjectiveWell-being, MIT PressEngel C (2002) Wild Health, PhoenixLaurel B (2003) Design Research, MIT PressPowazeck D M (2002) Design for Community,New RidersRobertson J, (1998) Beyond The DependencyCultureRojek C (1997) Touring Cultures, RoutledgeSontag S (1978) Illness as MetaphorZuboff S, Maxim J (2002) The support Economy,Penguin Press

AcknowledgementsI would like to thank the following peoplefor their help at various stages of theproject: Mike Pearson, Gordon Jowett,Joanne Hippolyte and Jim Dawton atPearson Matthews for their expertise,discussion and enthusiasm throughout theresearch. Stephen Hope, Miranda Chow,Paul Philips at Orange for advice andencouragement at various stages. JeremyMyerson, Roger Coleman, Rama Gheerawoand Margaret Durkan at the Helen HamlynResearch Centre for constant support andvision. Mark Fenwick, Sian Prime, JanetThompson and Xènia Viladàs at Nesta forreality checks. Cristina Rodriguez for helpingwith the print process. Ellen Jacoby and hergraphical eagel-eye. Anna Hiltunen and EvaTuunanen the Tekogirls and Roger Ibars forvital help and inspiration throughout theproject.

CIRCLES of CareA new approach to healthcarebased on social networksIndri TulusanThe Helen Hamlyn Research CentreInteraction Design, Royal College of ArtResearch partners: Pearson Matthews and OrangeFirst published in 2004by the Helen Hamlyn Research CentreEdited by Jeremy Myerson and Roger ColemanDesign by Ellen Jacoby, Indri Tulusan, Roger IbarsPrinted in BarcelonaType Univers, Poppl-Exquisit BQ© 2004 Indri TulusanBritish Library Cataloguing-in-Publication Data:a catalogue record for this book is available fromthe British Library. All rights reserved. No partof this document may be reproduced, stored ormade public in any form without prior consentfrom the publisher. Further copies can be obtainedfrom the Helen Hamlyn Research Centre.ISBN 1-905000-06-5

www.circlesofcarebook.com

The crisis of healthcare systems is anongoing issue, especially in Europeanwelfare states. In the UK we currently havea system where we wait for people to getill before we treat them. The ideal patientfollows the expert’s instructions withoutdispute. This is similar to a child’s healthbeing the full responsibility of its parents.However, people are now becoming moreresponsible for maintaining and monitoringtheir own bodies. Hence the growingmovement towards self-care and personalwell-being. Increasingly we look to socialnetworks of support before going to thetraditional expert system. But these socialnetworks – the Circles of Care – currentlyreceive little attention from design andindustry. ISBN 1-905000-06-5