Like most doctors, I can remember the first time one of my patients walked into my office with a stack of printed papers in her hands and a long list of questions—all derived from the newly emerging world of the Internet. Managing these types of interactions could feel daunting and even a little threatening but they were the start of something new: Patients and providers were beginning to engage with one another differently.
Since then, the Internet and related technologies have fundamentally changed the way we interact with each other. Now, instead of looking at printouts, I simply turn my desk monitor and sit with my patients to search the Net or review their health information together. It’s a joint effort.
What’s more interesting still is seeing how patient engagement has moved beyond individual patient-provider interactions on the front lines to the system level, with patient advisory councils within healthcare organizations, and government-based initiatives and plans that prioritize patient voices.
In early February, Dr. Eric Hoskins, Ontario’s Minister of Health and Long-Term Care, launched the next phase of the government’s action plan for healthcare. He shared the podium with a representative from Patients Canada as he discussed “Patients First: Ontario’s Action Plan for Health Care” and the government’s intentions to transform the province’s health system into one that focuses on patient experiences by putting patients at its centre.
At Health Quality Ontario (HQO), where I work, we now routinely seek patient input and leadership in helping define and advance our work.
It goes without saying that patient engagement has great transformative potential. However, the concept (and the way we should practise it) is still in its relative infancy. There are a few important questions we need to collectively consider and address.
How do we best prepare providers, patients and the public for patient engagement?
Providers are still learning how to work as inter- and even intra-professional teams to better understand their respective knowledge and skills in relation to patient engagement. As a provider, I know I want to meaningfully engage with patients, family members and even the public more broadly. (I am not alone in this respect.) But simply “commanding” or “expecting” health system providers and leaders to engage with patients is unrealistic. We need to invest in preparing people for this work and giving them the necessary tools for success. This preparation needs to start as early as during the school years (just as we are doing for inter-professional care); and for those already in practice, we must figure out to how play catch-up in a realistic and efficient way.
We also can’t expect patients and the public to easily engage in a system that often appears complicated in structure, culture and language, without offering help. We must explore ways to commit significant resources to making our work and our world accessible so that patients can also participate in a meaningful way.
How do we engage patients more broadly?
The patients we need to hear from the most are often the hardest to reach. Those who face economic, social, language, cultural, physical and psychological challenges to engagement will need thoughtful and respectful partnership efforts. Involve is one Toronto-based project that is currently targeting difficult-to-reach populations in order to help health planners design services that are universally effective. It’s a combined effort on behalf of the University Health Network’s OpenLab and WoodGreen Community Services, sponsored by the Toronto Central local health integration network (LHIN). By working with diverse, often under-represented populations, this project is one example of how care can be transformed from the patient level up.
How do we make sure that patient engagement is meaningful?
Just as health information on the Internet was hopefully a means to improving health outcomes by increasing health knowledge, so too must broader patient engagement lead to better outcomes. We cannot engage for the sake of engagement. We need to engage in a manner that improves the quality of care people receive in a meaningful way.
Having patients show up with printed sheets from the internet was a change that created some discomfort for providers in all professions. The path to broader engagement also represents potentially disquieting change – especially if we commit to meaningful engagement. As efforts to spread this change extend to embrace individual providers, organizations and larger system initiatives the need for openness and in fact courage is going to be a pre-requisite
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Patients need access to high quality health information if they are to participate in shared decision making with their health care providers. Some hospital libraries in Ontario do not allow patients to access the resources. There are books about patient engagement in these libraries and patients and the public are not welcome in the library! As a patient, I would like to be able to work with the librarian in the hospital library to find the information that I need so that I can make informed choices with my health.
Patients come in to doctor’s offices with wrong information concerning their symptoms found on the internet. I believe the next step is to create a doctor recommended website that is trusted to give patients correct information and not tell them they have cancer after every webpage click.
Just about hitting the nail right in the head Mark! We are reaching a point of information saturation, leading to more confusion for patients. Howeverm as a patient, I don’t want to surf through another generic website for answers to my questions. I want those answers from MY doctor. I want to know what HE/SHE thinks, not something written by some faceless organzation from somewhere else. One of the biggest challenges the we will face with patient engagement will be the expectation that the “system” will answer the questions. When it comes to information and access to this infornation via technology, we as patients don’t want the system response, we want the individual thought leadership from the ultimate source of trust – our physicians.
The term – “patient engagement” is one, I believe, chosen by health providers. As a patient and sometimes caregiver, it will be important to “define” this term for all stakeholders so they have a mutually shared understanding of its meaning. “Communicating” will be the only “path” that will enable us to work together, whether in verbal discussions, written surveys, oral and/or written reports, presentations. We cannot afford to have mis-understandings, confusion, at any point in our process of working together, due to our choice, use of words, language.
Defining terms, words, so all share a common understanding, coupled with an “open” mind, willingness to listen, clarify with each other to ensure shared understanding will form the foundation for collaboration and success in our joint work – measureable improvements and sustainability our Health Care System.
1st Step : How do stakeholders define “patient engagement” from their various perspectives?
As Project Manager for the Northumberland PATH (Partners Advancing Transitions in Healthcare) I have learned firsthand the importance of authentic patient engagement and the enormous impact that it can have on our patients and their caregivers, healthcare providers, and the healthcare system.
I would agree with Dr. Tepper that patient engagement is in its infancy. There are islands of authentic engagement that are starting to form in Ontario, but they need support to connect and grow.
About one hour east of the GTA, Northumberland PATH is one of those early adopters, very fortunate to be supported by the visionary leadership and financial support of The Change Foundation and an example of meaningful patient and caregiver engagement that is demonstrating impressive results.
The Northumberland PATH Community Partnership consists of 12 health and social partners, including patients and caregivers, who joined forces as equal partners around the goal of improving experiences and meeting the needs of seniors living with chronic conditions as they transition through our complex healthcare system.
Together we have introduced meaningful improvements for seniors in our community, and the system as a whole.
In less than three years, Northumberland PATH has developed a series of initiatives to help seniors and their caregivers better manage transitions across the healthcare sector in our community. All of our solutions were developed because seniors and caregivers (and providers) told us what they needed. By working together, we’ve:
• designed and launched a patient portal and smartphone application to store patients’ personal health stories, monitor chronic health conditions and communicate with health care providers (a true first for Ontario);
• recruited, trained and assigned a team of Volunteer Transition Coaches to help support area seniors with the new technology and to manage transitions across the healthcare system;
• developed and launched a new website, pathwaytoagingwell.com, offering information, planning tools and resources to minimize the health-related challenges of aging; and
• developed a person-centered care model and a patient and family advisor model to help health care providers tap into and use input from patients and their caregivers.
I would agree with Dr. Tepper that providers are still learning to work together as inter/intraprofessional teams and that the system needs to invest in giving the providers the right tools and preparing them for success.
In PATH we have learned that authentic engagement and working together in co-design teams can be a catalyst for organizational and cross-sector teams to engage and work together differently and more effectively. With a common goal to meet the needs and improve the experience of the patient and their caregivers no matter where they are in the system or in the organization changes the conversations and teams work together in a very different way. We often say that it “puts the heart” back into healthcare.
I would also agree with Dr. Levy that not only does patient engagement need to be authentic and purposeful but we also need to understand individual needs and wishes and individuals need to be able to engage in their own care. The seniors and caregivers we engaged in Northumberland told us the same things. The tools that we developed together with patients and caregivers allow seniors to document their needs to share with their providers. This, in turn, promotes engagement in their own care, and provides the mechanism to receive feedback on experiences in real time.
Though it’s a pilot project, and focused by nature, the Northumberland PATH initiative is an example of meaningful patient and caregiver engagement that is demonstrating impressive results.
For an example of the impacts of these tools, I’d refer you to The Change Foundation’s recent video of Marilyn and Jim, two of our community’s participants, as well as this video highlighting the view of two physicians involved in the pilot. You can access these videos at http://www.changefoundation.ca/projects/path
With project funding wrapping up this June, work is now under way to incorporate PATH learning’s into the operational practices of the organizational participants like Northumberland Hills Hospital. Through a business case we are sharing with key health system leaders throughout the province, we will be asking for support to sustain and carry the work forward in our region and beyond.
We have had an amazing opportunity to be pioneers in this work. Now we need the opportunity to continue to put the blockbuster drug of patient engagement to work for meaningful and sustainable change.
For more on Northumberland PATH, click here, or contact us directly at 905-377-7791 or pathinfo@nhh.ca.
It was 2 1/2 years ago that Leonard Kish published his now famous blog proclaiming patient engagement as the blockbuster drug of the century so it’s gratifying to hear one of our healthcare leaders calling for deeper engagement with patients. In our view, this is the most relevant conversation of our time.
Patients across the province have been demonstrating their eagerness to engage as active members of patient and family advisory councils in hospitals, long term care, mental health, pediatric, and cancer delivery organizations. They’re advising on strategy, governance, care delivery, practice guidelines and engaging in experience-based design. They’re also active advisors and lay representatives in research, some even developing capacity as competent researchers in their own right.
In December at the Reaching the Summit conference for interprofessional education, the principle of a partnership with patients was extolled as the essential missing ingredient for the transformation of practice. To demonstrate this principle, for the first time 7 invited patient guests participated in the full session and individual breakout groups.
In February at the Ways and Means: Health Links conference, the patient partnership was described as the crucial piece of the Ministry agenda with Health Links. Deputy Minister Bell claimed that a focus on patient engagement is taking hold and that we need to empower decision making through education and knowledge translation. We heard from patients who shared their contributions to the design of care delivery to the most complex needs patients.
Last month at The Change Foundation Capstone Summit we learned of great examples of engagement in action and their positive outcomes. At the same time we were warned that it takes something different today to engage patients. Patient engagement initiatives will bump up against cultural norms and must be ready for them, but to get it right, they have to start with the patient voice. Cathy Fooks, CEO of The Change Foundation issued a clarion call, “Focus on the early adopters and support them. There will be skeptics and they will be loud”.
We support the need to train healthcare professionals in how to engage and work collaboratively with patients as well as the need to empower and enable patients with the skills, knowledge and capacity to be valuable contributors to a compassionate and sustainable healthcare system. In our efforts to work toward the same ultimate goal, we need to develop a common vocabulary, understanding of strengths, and what each group can bring to the table.
There are small platoons of patients demonstrating great leadership. We learned from Dr Jeff Turnbull how an army of citizens has been the difference in delivery care to the marginalized and homeless population in Ottawa. This is but a small example of the capacity of citizens to become responsible partners and meaningful agents of change.
Organizational theory tells us that true cultural transformation must start with a demonstrated and relentless commitment from the top echelons of the organization. The army of citizens, patients, families, and caregivers is ready to embrace a meaningful demonstration from the very top to the principles espoused in the partnership with patients. We’ve seen how effective this can be with examples like Kingston General Hospital and Cancer Care Ontario.
We agree with Dr. Tepper that it’s time to put the blockbuster drug of patient engagement to work in a more meaningful way. As such we renew our call to Minister Hoskins, originally published in an opinion piece on this site last October, to be that role model and catalyze true change by bringing the patient voice into the Ministry with the creation of “The Minister’s Patient and Family Advisory Council”.
Zal Press and Dawn Richards
Zal Press is Co-Chair of the Beryl Institute Global Patient and Family Advisory Council and Executive Director of Patient Commando Productions
Dawn Richards is a science and patient consultant. She is Vice President of the Canadian Arthritis Patient Alliance, the first patient advisor of the Canadian Medical Association’s Wait Time Alliance, a member of the Institute Advisory Board and Ethics Committee of the Institute of Musculoskeletal Health and Arthritis (CIHR), and a Patient Panel Reviewer of the British Medical Journal (BMJ).
The above two posts by Dr. Tepper and the wonderful response by Zal and Dawn truly highlight the importance of patient engagement. Personally, I do not like the term, I love the meaning and ideas behind what it is; however, given the relative infancy of the field I feel the term is often overused and not truly understood. Many people are seemingly jumping on the ‘patient engagement’ bandwagon without understanding the patient. I would hate for this term to be simply another buzzword, because at its heart, patient engagement has the profound ability to reshape healthcare.
In my humble opinion, it is a shifting of the didactic relationship between hospitals/healthcare providers and the patients. We are just beginning the conversation of medicine, which is being facilitated by patients taking an increased responsibility for the decisions surrounding their care and treatment options. This is no doubt being driven in part by the Internet and technology, as people are becoming savvier consumers of goods and services; the healthcare field is seeing a similar shift.
The ideas and thoughts put forward in the above posts need to be put into widespread practice. As much as we need to train the healthcare providers how to engage with their patients, we must also teach everyone how to engage in their own care and self advocate. Herein lies the challenge: how do we get people to take a more active role in their own health. It will take the combined efforts of all involved in healthcare to help even the most disengaged patients become even slightly more engaged. Healthcare, and by extension patient engagement, is not one-size-fits-all, and it needs to tailored to suit the needs of the individual. While this will take work, the efforts required to achieve true patient engagement will pale in comparison to the benefits that will be achieved. This is why I tip my hat to all the organizations working in true collaboration with patients to understand their individual needs and wishes. This is the essential first step in achieving true patient engagement.
Dr. Andrew Levy
andrew.levy.phd@gmail.com