Effects of Using Child Personas in the Development of a Digital Peer Support Service for Childhood Cancer Survivors

Background: Peer support services have the potential to support children who survive cancer by handling the physical, mental, and social challenges associated with survival and return to everyday life. Involving the children themselves in the design process allows for adapting services to authentic user behaviors and goals. As there are several challenges that put critical requirements on a user-centered design process, we developed a design method based on personas adapted to the particular needs of children that promotes health and handles a sensitive design context. Objective: The purpose of this study was to evaluate the effects of using child personas in the development of a digital peer support service for childhood cancer survivors. Methods: The user group’s needs and behaviors were characterized based on cohort data and literature, focus group interviews with childhood cancer survivors (n=15, 8-12 years), stakeholder interviews with health care professionals and parents (n=13), user interviews, and observations. Data were interpreted and explained together with childhood cancer survivors (n=5) in three explorative design workshops and a validation workshop with children (n=7). Results: We present findings and insights on how to codesign child personas in the context of developing digital peer support services with childhood cancer survivors. The work resulted in three primary personas that model the behaviors, attitudes, and goals of three user archetypes tailored for developing health-promoting services in this particular use context. Additionally, we also report on the effects of using these personas in the design of a digital peer support service called Give Me a Break. Conclusions: By applying our progressive steps of data collection and analysis, we arrive at authentic child-personas that were successfully used to design and develop health-promoting services for children in vulnerable life stages. The child-personas serve as effective collaboration and communication aids for both internal and external purposes.
Journal of Medical Internet Research

PEOPLE-Centred (DIGITAL) Health

Who are we in the health system?  Are we patients? Consumers? Citizens, clients, Canadians?  No matter what you call us – we are people.  Unique individuals with unique interests and health care needs; and it is important that we are at the table when decisions about our care are being made. 

This is true no matter “who you are” in the system and no matter what particular care you may require or may not require yet.  As Valerie Billingham said in her session address at the 1998 Salzburg Global Seminar, Through the Patient’s Eyes,  “nothing about me without me.”[1]

We know that Canadians want to be engaged in their care.  They want to be seen and treated as active members of the health care team.  Canada Health Infoway’s (Infoway) annual survey results continue to show that Canadians who have access to digital health tools feel more informed about their care; feel more engaged in their care and feel more confident, not only about the care they are receiving but about their ability to manage their health conditions too.[2]  Providers also recognize the value of giving patients electronic access, noting an increase in patients’ level of engagement and sense of empowerment regarding their own health.[3]

There is an increasing range of digital health solutions in use across the country today, and while we continue to lag behind some of our international counterparts, it is exciting to see that the use of these tools has doubled in the past two years alone.[4] [5] Canadians report that they are able to connect with their health care team through virtual visits, by requesting prescription renewals online, by self-booking appointments, and can access and share their personal health information electronically.

As we continue to explore the future of our health system, we know the potential to improve the patient experience and health outcomes are significant.  The need to do this is paramount and should be guided by the peoples’ voices. WE need to be involved in designing, implementing, and evaluating this change.  OUR voices need to be heard.  As described by the European Patients’ Forum, “empowered patients are part of the healthcare system.   They make informed choices, have better relationships with their healthcare providers, are committed to adhering to treatment, take responsibility for their care and seek preventative measures to better manage their health.”[6]

At this year’s e-Health Conference, Infoway will be bringing ‘regular people’ to the event through paid scholarships and to participate in a panel presentation, “Hearing from Patients on What They Think of Digital Health,” which will take place on Tuesday, June 5 at 10:30 a.m. (Track: Patient Engagement Through Digital Health).

Throughout the conference there is a strong focus on this important topic:

  • Sunday Symposium (Sunday, June 4, 12:00 p.m. – 4:00 p.m.)
  • Advancing Frameworks for Patient Engagement (Monday, June 5, 4:00 p.m. – 5:30 p.m.)
  • Engaging Patients through Digital Health (Wednesday, June 7, 8:30 a.m. – 10:00 a.m.)
  • And more!

Plan to attend some of these promising sessions to learn how your colleagues in the industry are working together to include people in the future of digital health.

I invite you to also take some time to chat with our patient scholars and panelists during your time at the Conference.  Their stories and personal journeys are impactful and their perspectives, enlightening.

I look forward to continuing this discussion with you.  Feel free to connect with me on Twitter @Cassie482. See you at e-Health 2017!

Cassie Frazer has 20 years of health care experience working in numerous roles, including 12 years as a front-line Respiratory Therapist.  She has a Bachelor of Science from Queens University and a Masters in Heath Administration from the University of Toronto.  She was a co-founder of the Pan-Canadian Change Management Network, a leading contributor to the National Change Management Framework and is a certified health informatics professional. Cassie currently works for Canada Health Infoway as the Program Director for Consumer Health & Innovation.  Within the broad portfolio of digital health initiatives she manages, she is able to leverage her experience and interests in change management, health informatics and innovation.


[1]
Valerie Billingham. Through the Patient’s Eyes, Salzburg Seminar Session 356, 1998. Cited in N Engl J Med 366;9 nejm.org, March 1, 2012

[2] Canada Health Infoway. Connecting Patients for Better Health: 2016. Available at: https://www.infoway-inforoute.ca/en/component/edocman/resources/3152-connecting-patients-for-better-health-2016

[3] SRDC. Impacts of direct patient access to laboratory results – Final Report. August, 2015.  Available at:  https://www.infoway-inforoute.ca/en/component/edocman/2775-impacts-of-direct-patient-access-to-laboratory-results-final-report/download

[4] The Commonwealth Fund. Commonwealth Fund International Survey of Primary Care Physicians in 10 Nations. December 7, 2015.  Available at:  http://www.commonwealthfund.org/interactives-and-data/surveys/international-health-policy-surveys/2015/2015-international-survey

[5] Canada Health Infoway. Connecting Patients for Better Health: 2016.

[6] European Patients’ Forum – Patient Empowerment Campaign. May 2015.  Available at: http://www.eu-patient.eu/

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e-Health Annual Conference & Tradeshow 2017 | e-Health 2017 Toronto, ON

Inspiring Bold Action in Canada’s Digital Health Community

Brent Diverty is the Vice President, Programs for the Canadian Institute for Health Information (CIHI) and an e-Health 2017Ambassador. In his role at CIHI, Brent oversees CIHI’s extensive data holdings, which span the continuum of health care services and also contain related financial, pharmaceutical and workforce data.  Connect with him on Twitter @BDiverty   

I’m thrilled to once again be an Ambassador for e-Health, and on behalf of CIHI, proud to co-host #eHealth2017.  As an international leader in health data and information, CIHI has a responsibility to provide and publicly report on the health system.  Co-hosting eHealth 2017 along with COACH and Infoway provides us with a great opportunity to work alongside our colleagues to inspire the type of bold action needed to accelerate improvements in health care and outcomes.

I’ve been participating in e-Health for several years, and my own experience has always been a rewarding one. Each year I am inspired by the insights I gain and the renewed connections I make.  This year I’m certain will be no exception.  Whether moderating or participating on a panel, exploring the trade show or pitching ideas at the Hacking Health @ e-Health 2017, there are countless opportunities to learn about advancements and challenge your thinking.   

Consider, for example, predictive analytics and their potential to transform health care.  This is one of the topics we will be exploring at the opening plenary session on June 5 which I’ll be moderating.   In preparation for the session, I spoke with keynote speakers Anne Merklinger of Own the Podium and Canadian Tire’s Paul Robinson about the transformative power of predictive analytics and why you can trust them to make evidence-based investment decisions. We all agreed they offer untapped potential for health care in Canada. We hope this discussion, and the many others you hear this year at eHealth 2017, will inspire you to take bold action in your own organization.

Join us this year. Add your voice and expertise as we learn from—and celebrate—our past successes and be inspired by some of the best that Canada’s digital health community has to offer.    

See you at #eHealth2017

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e-Health Annual Conference & Tradeshow 2017 | e-Health 2017 Toronto, ON

Nieuwe innovatie EIT Digital gericht op verbeteren levenskwaliteit parkinsonpatiënten

EIT Digital gaat een digital innovatie Vital@Home ontwikkelen die de levenskwaliteit van mensen met de ziekte van Parkinson verbetert. De innovatie-activiteit is erop gericht de verergering van de symptomen bij deze ziekte te vertragen of zelfs te voorkomen. Binnen het project Vital@Home worden onopvallende wearables met sensoren ontwikkeld die continue en objectief de bewegingsactiviteit van […]
DigitaleZorg.nl

Blog: gezocht: nieuw digital health icoon

In mijn herinnering ging er een ‘ahhh’ en ‘ohhh’ door de zaal, toen Lucien Engelen op een digital health congres drie jaar geleden de Scanadu Scout tevoorschijn haalde. Hij hield[…]

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Newsroom: Trump en digital health: “Scientists And Doctors Are Freaking Out”

eHealth en mHealth nieuws uit Nederland en het buitenland: alles over gezondheidsapps, wearables, stappentellers, EPD en PGD, fitness, persoonlijke data.

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Scaling Innovation in Digital, Mobile and Connected Health

mobile-blog

John Mattison, CMIO Kaiser Permanente USA, has spoken at the Mobile Healtcare Conference in october 2016. Kaiser Permanente is USA’s largest not-for-profit health plan and health care provider, with annual operating revenue of more than $ 50 billion, 21 hospitals and 8000 doctors. Kaiser Permanente has been recognized as the national leader for both outpatient and inpatient systems, leading the country for hospitals awarded with the top HIMSS level 7 designation. Before, John practiced internal medicine and critical care at Scripps Clinic and Research Foundation, where he served as director of the Intensive Care Unit. Last year, Kaiser Permanente conducted for example 10.5 million patient-doctor visits via email, phone or video tools. With the KP app patients can access most of their electronic health l records. Kaiser Permanente is a leader in prevention and personalized care.

view the interview


Transcript van het interview

What do you see as the most influential trends in mobile healthcare?

I think the most influential trends in mobile healthcare really have to do with dose applications and tools that are focussed on using digital sensing and digital tools to create mindfulness. So instead of someone saying “I need to take 200 more steps today to reach my goal” I like to tell people “stop looking at your monitor, your fitbit or whatever as frequently and become more mindful; if you see an elevator, take the stairs, so that you are actually changing your behaviour unconsciously towards healthier habits, rather than relying on a digital nanny”, because we know that digital nanny’s tend to be subject to habituation and extinction and we lose those things that we are trying to achieve by being too responsive to that digital nanny. There are other tools that help us understand how to have a healthy heart beat, a healthy heart rhythm, that also can help guide us in terms of managing our stress, maintaining our composure and being mindful, that really helps lower stress overall, which is one of the fundamental methods of maintaining a high level of health. The second thing that I think is important is bringing a much more motivational science and motivational economics into the mobile health ecosystem, so that we actually understand that different people are motivated in different ways. There are a lot of studies published that have been underwhelming in terms of the benefits of a lot of the mobile health technology and I think the principal reason for that is that they are being used in relative isolation. What we need to do is create more of a behavioural symphony of wellness that has the goal of creating personalized motivational tools and use a motivational formulary that is different for different people and use [motivicons 2.07] – that could be a video, that could be an [? 2.10], that could be a text message, that could be an email, that could be a video visit, that could be a humorous video, that motivates you in a way that works for you – but we need to be much more personalized in how we motivate people to achieve their own goals. I think a lot of the reasons that there is some controversy around “why is it taking so long to see the real benefits of digital mobile healthcare?” have to do with the fact that we are taking very simplistic isolated solutions rather than putting them in the context of a behavioural symphony that is relevant to me, motivates me towards my goals, rather than is directed at a population of people who on average respond in a certain way. So I like to think of using modern technology to restore some of the ancient wisdoms of mindfulness and resilience using personalized motivation tools.

Your focus is on patients. How do professionals in healthcare benefit from mobile health?

Well, I would change the premise of that question a little bit, because I think patient-centered care is an oxymoron. I like to think of taking care of people. Because what motivates us in our lives is not just getting a lower blood pressure or getting a better blood sugar. What motivates us in our lives is having more peace in what we do, more gratitude for what we have, more forgiveness for others around us, so that we can actually have a better life experience and lead a longer healthier life. And so we need to look at the whole person, not that subset of our experience as human beings that we call a patient. I believe it is an oxymoron, because patients are what doctors call people. I like to think of person-centered care rather than patient-centered care. Now setting aside the oxymoron of patient-centered care, how do we motivate and how do we manage the physician side of this physician-person relationship. I like to say that most physicians are people too. So they tend to respond to the same kind of motivational tools as non-physicians do. So what we really need to do is help physicians understand that their goal is not just to lower the blood sugar or just to lower the blood pressure, but it is to create more resilience and a higher level of health and wellness in their patients. There is a great book called “Drive” by Daniel Pink, which talks about how you motivate people, whether they are physicians or people that physicians are accountable for helping. In Drive he breaks it down to three levels of motivation. Motivation 1.0, 2.0 and 3.0. Motivation 1.0 is where you use basically food, water, air, shelter, sex, very primitive. Motivation 2.0 is carrots and sticks, where you use money and punitive measures for motivation. Motivation 3.0, which is by far the most powerful and sustainable; almost all of us are born with a sense of wanting to make the world a better place, to feel that we have something to contribute, that we are making a difference in our communities and that we are actually being appreciated for how we apply our skills to improve our community. And that sense of purpose and that sense of dignity is something that applies not only to the people we treat in the healthcare professions, but applies to us as individuals. And so to the extent that we rely on motivation 3.0 in Daniel Pinks book and help physicians and other healthcare professionals realize their aspirations to make the communities better, to make the individual people they are responsible for healthier and more resilient; it gives them the gratification of knowing that they have purpose and dignity in what they do. And I think a lot of that has been displaced by all the distractions of technology and all the demands being placed upon providers today. And we need to more and more use technology, but put it in a background and use a much more human-centered design and restore those very fundamentals of how we as humans help each other out and restore a sense of gratitude, a sense of dignity, a sense of purpose in what we do every day. [That sounds very high lofty, but in fact it’s really the scientific evidence that Daniel Pink characterises is profound that that is most motivating and most sustainable for most people 6.48].

You seem to have a very positive outlook on healthcare and maybe even mobile healthcare. Do you see this positivity in this conference that you are attending right now?

I absolutely do. I still think it and I am seeing that here, but I really think that where we need to create a shift in is why we are seeing incredible innovation and incredible entrepreneurial solutions… The entrepreneurs themselves need to be much more deeply embedded, not just with the healthcare professionals but with the patient very early in design, with the people that they are trying to help, with a very much of a human-centered design, so that from the get-go there is much more of a comprehensive view to create that behavioural symphony of wellness that is required to really motivate people, not with just a narrow slice of their live of a narrow slice of [decision 7.39], but more holistically. And we need to think of solutions that are fundamentally based on human values and human aspirations, that are supported by insentive models and organizational structures and then finally by technology. When we are trying to develop the technology as the lead in healthcare I think that we are neglecting some of the more important infrastructure that is necessarily being placed for that technology to be successful. So a more holistic view from the ground up of what it is we are trying to achieve and how we achieve it and how we make the technology reinforce those values and objectives is the important part, that there are still lots of opportunities to improve on.

 

Mobile Healthcare 2017

Volgend jaar wordt Mobile Healthcare georganiseerd op 23 november 2017! Wilt u Mobile Healthcare 2017 niet missen en als eerste op de hoogte zijn van programma updates? Laat dan uw gegevens achter!

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Dit zijn Accentures vijf digital health trends voor 2016

Adviesbureau Accenture komt voor zijn Digital Health Tech Vision 2016 met vijf trends die het digitale zorglandschap gaan vormen

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Telemedical Education: Training Digital Natives in Telemedicine

Telemedicine plays an important role in the delivery of medical care, and will become increasingly prominent going forward. Current medical students are among the first generation of “digital natives” who are well versed in the incorporation of technology into social interaction. These students are well positioned to apply advances in communications to patient care. Even so, providers require training to effectively leverage these opportunities. Therefore, we recommend introducing telemedicine training into medical school curricula and propose a model for incorporation.
Journal of Medical Internet Research

Investeerders behouden interesse in digital health in eerste helft 2016

De Amerikaanse incubator Startup Health brengt hun halfjaarlijkse rapport over digital health investeringen uit. Conclusie: het ziet er nog steeds rooskleurig uit voor de health tech industrie.

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