Patients' Advicefor a H.U.M.A.N Digital Health

A New Humanism for Digital Health

Patient Associations' recommendationsfor the Development of Digital Health - July 2020

Chapter 5: Authentic

Introduction

TABLE OF CONTENT

Prepared byDigital Health Academy; Fondazione MSD

Chapter 1: Digital Health

Chapter 2: Health Literacy

Chapter 3: Uncomplicated

Chapter 4: Meaningful

PDHA 2018: Digital Health at the service of patients

3

6

10

12

14

16

20

Chapter 6: Natural 18

PDHA 2019: How human is the technology? 21

INTRODUCTION

The global health emergency, due to the spread ofCOVID-19 has demonstrated very clearly thegrowing need for digital health solutions. In thehistorical moment we are going through it isimportant to rethink organisational models andrelational models in digital care processes. Whateffects will the pandemic have on digital health andits evolution?We are no longer at the stage where we have tothink about the benefits of digitising health, we arealready beyond that: immersed in a world that isnow phygital; a world that combines physical anddigital processes, in which we are all called to doour part to become the leaders and protagonists ofnew paths.Patient Associations clearly want to have an activerole in the development and construction of a newdigital normality. For nine years now, the MSD Foundation hasdeveloped multidisciplinary projects involving allactors in the health system - health management,institutions, patient associations and journalists -on key health policy issues. Through the PatientAcademy, in particular, the MSD Foundation hasbeen working alongside Patient Associations inempowerment and engagement projects, with aparticular focus on the opportunities andchallenges offered by digital health, well aware thatinnovation - for it to make a concrete contributionto improving the quality of life and health - can onlystart with people and be tailored to their actualhealth needs.In this context the Patients' Digital Health Awardhas been conceived, a true one-of-a-kind, in Italyand Europe, this year at its third edition which, withthe collaboration of the Digital Health Academyand the unconditional contribution of the MSDFoundation, involves over 40 Patients' Associationsto scout and reward those digital innovations thatcan make a difference in patients’ quality of life.

Why prepare a vademecum of the Digital Health Patients' Associations?

2

For the first time, Patient Associations arechoosing, evaluating and rewarding digital healthsolutions. The prize was an opportunity toincrease the digital empowerment of theassociations and also to collect feedback frommembers with two surveys involving more than800 patients. (see in the appendix, the results ofthe 2018 and 2019 Patients' Digital Health Awardssurveys).

In this multi-year comparison, the Patients'Associations have debated the concept of digitaland technological humanism. This calls intoquestion the stereotype that technologies areassociated with depersonalisation anddehumanisation. From this long training and experience, enrichedalso by the direct evaluation of hundreds ofprojects and ideas, the need was seen to set somerules that can guide from the point of view ofpatients who work in digital health.

Patient Association Recommendations forthe development of Digital Health set out aH.U.M.A.N. approach to digital health:H: health literacyU: uncomplicatedM: meaningfulA: authenticN: natural The Digital Health H.U.M.A.NRecommendations aim to offer direction toall those who invent, develop and apply digitalsolutions, from start-ups to publicorganisations. They serve to keep the person,both the patient and the caregiver, at theheart of the technology.The Recommendations were developed bythe Digital Health Academy team on the basisof structured feedback from 40 patientassociations.

INTRODUCTION

3

DIGITAL HEALTH ACADEMYThe Digital Health Academy was created with theaim of spreading an authentic digital culture inhealthcare and offering highly specialised trainingcourses with innovative contents and formats.It has developed a wide-ranging training offer,which meets the needs of the main players in theco-construction of health:  pharmaceuticalcompanies, doctors, patients, associations andindustry managers.The Digital Health Academy is the reference pointfor all those who think of Digital Health as a newparadigm of care and who want to be an activepart of this process of digital healthtransformation. Further information can be foundon the website: www.digitalhealthacademy.com FONDAZIONE MSDThe MSD Foundation was established in 2004 byMSD Italia, which wanted to create an entityindependent and autonomous from anorganisational point of view, able to contribute tothe growth of culture and the dissemination ofknowledge in the health, scientific, industrial,social and cultural fields.The MSD Foundation supports and develops -both directly and through authoritative,independent third parties - initiatives and projectsaimed at increasing knowledge in the healthsector, with a specific focus on topics such ashealth literacy, health economics andhealth/social policy. In particular, for ten years -through the annual initiatives of the PatientAcademy - MSD Foundation has been promotingthe empowerment process of PatientAssociations.Further information can be found on the website:www.msd-italia.it

PATIENT ASSOCIATIONS

CHAPTER 1:DIGITAL HEALTH

CHAPTER 1:DIGITAL HEALTH

Health opportunities is the commondenominator of different ways of thinkingabout digital health.It is accompanied by essential, concrete help,therapeutic support, resource, necessary andsimplification.Digital Health can be told or imagined invarious forms, but it certainly represents animportant opportunity for everyone.At the time of writing these Guidelines, weare experiencing a global health crisis thatwill affect the future of each and every one ofus; on the one hand, the pandemic, on theother, the major economic changes have andwill have an impact on all sectors of themarket. Healthcare is not exempt from allthis and digital health is an opportunity torethink organisations and processes, toidentify new treatment models, to accelerateresearch and development of therapies anddiagnostics, to cope with the growing healthcrisis, to expand the capacity of our healthsystem.Patients have a great many positiveexpectations.

What are Digital Health's keywords for Patient Associations?

6

These must include being able to obtainthrough new digital solutions animprovement in quality of life andrelationships (with the doctor, other patientsand caregivers).Then there is the desirable prospect that,through the use of innovative solutions, wecan increase adherence to treatment andtherapies, as well as achieve greaterpersonalisation in the management of livingwith the disease and greater engagement:that is, to feel really take a leading role in themanagement of one's own health in order toimprove the course of treatment.

CHAPTER 1:DIGITAL HEALTH

Let us start with the first letter ofHUMAN: H for Health Literacy, or digitalhealth literacy. This dimension refers tothe ability to obtain, read, understand anduse information related to digitaltechnologies, to make appropriatedecisions and correct use. What shoulddigital health content be like to informpatients?The keyword, according to the Patients'Associations, is semplify. Streamline,facilitate, enable: life is alreadycomplicated enough for everyone,especially patients; this is whyinformation about technologies and theirvalue must be clear and concise.Patients are willing to learn new things,to deal - if necessary - with digitalfatigue, but they need appropriatepathways and instructions.Technology must also inspireconfidence: the associations attachgreat importance to the whole issue ofthe reliability and verifiability ofinformation and authoritativeness ofsources. The increasingly wide range ofdigital services on offer requires thesharing of reliable information and easilyaccessible institutional guidelines, whichmake it possible to understand what, forexample, differentiates telemedicinefrom a remote monitoring system ordigital therapy.

What features must digital technology have according to patients to meet these needs?

7

U for uncomplicated: what makestechnology easy to use? Certainly theintuitiveness, immediacy, speed in theregistration process, as well as a user-friendly graphical interface. But, ifappropriate, patients ask that not everythingbe left at the mercy of the digital device andthat, by contrast, "real" forms of assistancecan be provided, with individuals ready tointervene for remote support.M for meaningful: what gives a technology"meaning" for the patient? In other words:what does a technology need to be valuableto patients? Clearly, it must be able tosimplify life and facilitate the managementof the disease, streamline bureaucraticprocedures, wait times for visits andbookings and access to hospital. Butmeaningful technology must also increasepatient engagement and compliance,facilitate relationships with caregivers andother patients and reduce human error. Lastbut not least, a digital health solution is alsoexpected to solve what has not been solvedto date, or to find more effective answersthan those identified so far.A for authentic: how can a digital solutionbe "authentic"? What processes shouldinspire the development of new digitalhealth solutions?Developers and start-uppers should, first ofall, think like a patient, analyse the problemfrom their perspective.

H UMA

CAPITOLO 1:LA SALUTE DIGITALE

Only by putting yourself in the patient'sshoes will it be possible to design anysolution with the real difficulties andneeds in mind. Patients are willing to beinvolved in the design phase. And theysuggest that carers and caregiversshould also be involved in this process,so that the quality of relations betweenall players remains at the centre.N for natural: how can digitaltechnologies fit more naturally into thepath of life? First of all if they are easy touse, as is the case with the smartphone:today we turn on our telephone toperform multiple functions thatpreviously seemed complicated to us; inthe same way patients expect to be ableto manage new digital solutions forhealth.

8

In the following sections we will see,specifically, 10 rules for each letter of theacronym H.U.M.A.N., ten indications on howto make digital health more humane, fromthe patients' point of view. On the one hand, the Patients' Associationsseem to be asking digital to do better thanman: reduce errors, reduce the time andcomplications of the current healthorganisation and find new solutions toproblems that are as yet unsolved. Therewould appear to be a sometimes futuristic(and optimistic) expectation in whichscenarios that have not yet been fullyimagined are hypothesised. On the other hand, digital technologies areasked to be "human", to resemble the bestpart of ourselves, not to abdicate all theempathic, experiential and social skills thatcharacterise human beings. Ultimately, a technology must go beyondman, yet be "human", it must not forget whatonly we humans can do: reassure, support,assist, eliminate distances, improverelationships and, above all, make us feelsafer, stronger and more aware on life'sjourney, especially when we live with illnessalong the way.

N

CHAPTER 2:Health Literacy

H

CHAPTER 2: HHEALTH LITERACY

The evolution of digital technologies in healthcare is shaping a new healthcare model. Digitalhealth solutions are constantly growing. Tools such as medical apps, telemedicine and digitaltherapies are increasingly improving disease prevention, diagnosis and treatment processes. In this context of innovation, the first real challenge becomes the cultural one: how to adopt anew vision that is really based on the sharing and transparent management of information? It isclear that, first and foremost, patients need to be properly informed about the opportunities,risks and requirements of digital solutions.

What features must communication on digital innovation have in order to correctly inform patients?

1. Clarity: information must be clear, simple,straightforward; digital content must beexpressed in comprehensible language.2. Concise: the information must be short,essential and to the point.3. Multimedia: the textual content must beaccompanied by images, illustrations,infographics, icons, photos, videos and anythingthat can help understanding.4. Reliability: the contents must be reliable,secure, validated and verified. They must comefrom authoritative sources. All data must includeofficial sources (WHO, Ministry of Health, ISS,etc.).5. Accessibility: the information must be inItalian, without the use of odd English words hereand there, accessible to all and understandable toevery age group. Technicalities should beavoided, but without trivialising the specificthemes and references to the therapeutic areaand the pathology.

10

Communicating with each other, exchanging information is nature; giving proper consideration to information we are given is culture.

Goethe

6. Relevance: the contents must respond to aconcrete need of the patient. The informationmust be high quality, i.e. relevant to patients.7. Uniformity: content must be accompanied bytools to support digital patient literacy, such askeys and digital vocabularies. A list of vocabularyand standardised definitions are very importantto simplify the information.8. Update: information must be updated in atimely manner, whenever new elements andneeds arise. Even if present in official sources,outdated information may no longer be valid.9. References: content must include referencesto studies, projects, activities carried out in healthcare facilities or in partnership with associationsand scientific societies.10. Testimonials: information told is moreusable. The involvement of authoritativescientific experts and speakers is recommendedto make the information more understandableand accessible.

CHAPTER 3:Uncomplicated

U

CHAPTER 3: UUNCOMPLICATED

The process of the digitisation of healthcare must be able to ensure greater ease of access totechnological solutions for all. For change to be real, democratic and rooted in the population,digital health must become "open health": a model of health accessible to all: patients,caregivers, doctors, health workers.Accessibility does not only mean the necessary technical equipment and internet access, with areduction of the digital divide (the gap between those who have adequate access to the internetand those who do not); accessibility also means the quality of such access and the reduction ofdifferences between individual digital literacy levels.

What features make digital technology easy to use?

1. Intuitiveness: must be able to be used evenwithout an instruction manual.2. Immediacy: the user must be able to makeimmediate use of it, with a few clicks to performactions and commands.3. Ease of use: must have a simple graphicaluser interface and easy functionality, with the useof buttons and menus that accompany thefinalisation of the prefixed task.4. Quick registration: must require just a fewsteps for registration and privacy consent, which,in turn, must be clear and understandable.5. Assistance: must provide a helpline also onthe telephone with the possibility of receivingsupport from an actual operator and not onlyfrom automatic systems.

12

Everything should be made as simple as possible, but no simpler.

Albert Einstein

6. Customisation: must allow you to choose yourpreferred and most useful basic functionality.7. Integration: digital health solutions need to beas integrated as possible to reduce the levels offragmentation and overlap between differentsolutions that can lead to confusion,disorientation and avoidance of use.8. Multi-device: must be designed taking intoaccount the different possibilities of use andaccess from different devices.9. Multi-ability: must be designed with people'sdifferent abilities in mind.10. Multilevel: must provide a set of basicfunctions and services easily accessible to theless experienced user, but also more advancedfunctions and services accessible to the moredigitised user.

CHAPTER 4:Meaningful

M

CHAPTER 4: MMEANINGFUL

A new technology, an idea, an innovative solution, an intuition, can be of great help to meet thereal needs of those who are sick and significantly improve their existence. But when does a technology become truly relevant in a patient's life? Only when newinformation, devices and solutions are added to an already complex routine does digitaltranslate into meaningful support. A new digital culture must make sense and have meaning forpatients.

What does a technology need to have value from a patient's point of view?

1. Simplify life: technology must facilitate themanagement of the disease for the patient,simplify the bureaucratic procedures of the carepath, reduce the time given to the patient for hislife and to the clinician for the relationship withthe patient.2. Ensuring security: the technology must besecure, tested and meet the required scientificand service standards.3. Protect your privacy: digital technology mustguarantee the privacy and protection of personalinformation, taking all necessary measures toprotect sensitive data.4. Increase engagement and empowerment:digital solutions must facilitate the active,informed and aware involvement of the patient inthe treatment process5. Increase compliance: thanks to the use oftechnology, the patient must be able to improveadherence to therapy and disease management.

14

Culture' is a finite segment of the meaningless infinity of the world process, a segment on which human beings confer meaning and significance.

Max Weber

6. Reassure: the digital solution must reassurethe patient, make them feel happier in diseasemanagement and relieve the psychologicalburden of the disease as much as possible..7. Facilitate the relationship with the caregivers:technology should facilitate contact with theirdoctors and help to improve the doctor/patientrelationship.8. Facilitate the relationship between patients:technology must foster sharing with people livingthe same condition and with the associations ofreference. It can help to overcome loneliness andhelp learning from others.9. Reduce human error: a technology acquiresparticular value if, through its use, the reliability ofa diagnosis/care/therapy is improved and thepotential for human error is reduced.10. Innovate: a new digital technology needs tobe developed either to respond to problems thathave not yet been solved, or to find moreeffective solutions than those already existing.

CHAPTER 5:Authentic

A

CAPITOLO 5: AAUTHENTIC

Digital innovation in health is recording increasingly encouraging data in investments, jobopportunities and the development of start-ups. Digital health is a globally evolving marketsector that will continue to grow. In this context in great ferment, the flip side of the coin - from the patients' perspective - may bethat sometimes technologies respond more to market logics and fashions of the moment thanto the actual needs of those who have to use them, of those looking for the best ways to livethemselves.

What are the processes that should inspire the development of authentic technologies?

1. Start out from real needs: to develop a trulypatient-oriented digital solution you need to thinklike a patient.2. Analyse the difficulties: before proceedingwith the development, it is advisable to have aclear analysis of the difficulties that the patienthas to overcome in relation to his disease.3. Involve the patients: patient associations needto be involved in the process of developing thetechnology, in order to draw on a wide and variedwealth of experience.4. Include: technologies must be developed withthe most fragile people and all age groups inmind, including the elderly.5. Involve doctors: health professionals must beinvolved in the design of the technology.

16

Who should live your life if not yourselves? So live yourselves.

Carl Gustav Jung

6. Involve caregivers: for a better managementof everyday life and to evaluate the effects oftechnology on the patient's life, solutions shouldalso be designed together with family caregivers7. Measure: the development and use of asolution must leave room for the collection ofinput and feedback from users/patients so thatthe solution is always aligned with their needsand opinions, as they change over time8. Cover new needs: study deficiencies in thesocial-healthcare structure in order to find newsolutions to the problems.9. Broaden horizons: study examples andtechnological solutions already developed in theworld.10. Ensure independence: the content of thetechnologies must not implicitly conveycommercial indications about medicines andservices.

CHAPTER 6:Natural

N

CAPITOLO 6: NNATURAL

Patients' lives, chronic and otherwise, can be very complicated. If technology fits naturally into apatient's life, if you get a real lightening of everyday complexity, digital can really be an addedvalue.

How can technologies fit more naturally into the path of life by improving everyday life?

1. Use on smartphones: technologies must beusable through the digital tools most commonlyused in everyday life, such as the smartphone.2. Customisation: technologies must be able toincrease the possibilities of customisation ofcare for the patient.3. Accessibility: the solutions must makeavailable the consultation and organisation ofyour medical records, your personal history, tohave full access to them at any time with a click.For example, when checking, all information mustbe at hand.4. Everyday management: solutions mustsupport the day-to-day management of thedisease for the patient.5. Lifestyle: technology must provide supporteven beyond the illness, to improve a patient'sdaily life as a person with suggestions regardingnutrition, physical activity and psychological well-being.

18

We are nearing the point where computers and robots will be able to see, move and interact naturally, unlocking many new applications and empowering people even more.

Bill Gates

6. Caregiver support: digital solutions mustsupport the patient's daily routine, replacing thefunctions of a caregiver as far as possible andfacilitating communication and the patient'srelationship with family members7. Coaching: digital solutions must remind,stimulate, accompany, facilitate the managementof complexity and mitigate the fatigue of care.8. Facilitate contact: digital solutions shouldfacilitate consultation with the caregiver and thespecialist and ensure this in the shortest possibletime.9. Decrease movement: digital solutions shouldhelp the patient to be followed as much aspossible at home, strengthening telemedicine,avoiding access to the hospital, as well as longwaits for both bookings and visits.10. Emergency support: digital solutions mustallow to launch an alarm every time vitalparameters deviate from the norm and record thepatient's parameters daily in a simple andintuitive way.

PDHA 2018Digital Health at the service of patientsThe survey was conducted in May 2018, involving 40 patient associations.A total of 740 patients took part, 63% women and 37% men, aged between 18 and 75 years.

19

PDHA 2019How human is the technology?Between July and September 2019, a survey was carried out involving the 43 PatientAssociations of the PDHA: the results offer an interesting insight not only into the use of digitaltechnologies but also into the importance they take on when, without losing sight of actualneeds and requirements, they become more 'human' and thus improve people's lives.

20

www.pdha.it