Beyond tokenism: How hospitals are getting more out of patient engagement

When Frank Gavin’s son was a child, he frequently had to be rushed to the emergency department at Sick Kids Hospital in Toronto. One of the first things that struck him was, despite all the young children and parents in the department, finding the washroom was like navigating a maze.

Gavin’s experience as a parent accessing services sparked off decades of his involvement on various “patient engagement” roles at Sick Kids and elsewhere. While the term is defined in numerous ways, in plain terms, patient engagement in health care delivery is when patients, families and caregivers have input in decisions about how to improve communication to patients, make processes more efficient, improve care or even design better facilities.

Patients (used in this article to include patients’ family members and caregivers) are often able to see areas for improvement that health professionals miss. “When it’s a place you come every day, it’s hard to imagine what it’s like for the very first time under very particular circumstances,” says Gavin.

Angela Morin became a patient advisor at Kingston General Hospital, after seeing problems with the care of her friend with cancer. Health providers may see problems but “are nervous about speaking up and don’t want to offend their employer,” she says. When patients are encouraged to talk about their experiences and provide constructive criticism, says Morin, “they can open the door to a whole conversation.”

Patient engagement projects are changing the way things are done at hospitals across North America. A recent survey of around 1500 acute care hospitals in the US found almost 40% had a patient and family advisory council. And in 2014, the Ministry of Health mandated that all Ontario hospitals involve patients when creating quality improvement plans. While there is evidence that involving patients in their own individual care improves outcomes, the evidence that involving patients in health care in general improves outcomes is scant. That may be because patient engagement is so new and there is little agreement on what success looks like.

For instance, at South Health Campus in Alberta, one change brought about by citizen advisors is that family members are now permitted, and encouraged, to wait in the recovery room – so that they can be “a familiar voice” as a loved one wakes up after surgery, explains Colin Del Castilho, facility medical director of the organization. In many other areas, too, “family presence” is encouraged. But the benefits of such an intervention, while seemingly obvious, are not necessarily easy to show with numbers.

In other cases, benefits are easily measurable, however. At Huron-Perth Health Alliance in Ontario, patient involvement brought about a “tagging” system in the lab so that blood samples from cancer patients would be prioritized – now, very sick patients wait 30 minutes, instead of the previous two hours. At the McGill University Mental Health Services, involving patients in decisions around improvement efforts contributed to a reduction in transcription errors of 60%.

While in its early stages in the 1990s patient engagement involved surveys and focus groups, today patient engagement is not just about “consultation” but also about “collaboration,” says Gavin. Increasingly, patients are sitting on decision-making committees with senior health care managers.

But as more health organizations attempt to collaborate with patients, there are growing pains. In some cases, says Julia Abelson, a faculty member of the Centre for Health Economics and Policy Analysis at McMaster University, hospitals launch patient engagement activities because they think it’s important to work with patients, but they may not be clear on the purpose. They may not explain the decisions they want patients to be involved in or the role they expect patients to play, she explains. Laura Williams, interim director of patient engagement at Health Quality Ontario adds that in some cases patients might not be included “early enough in the process” for their input to make a meaningful difference. “It shouldn’t be a token check mark,” she says.

“We’re at a really interesting time with patient engagement now,” says Gavin. “Pretty much everyone gets why it’s important…the huge question is around how.” In an effort to better answer the question of how to do patient engagement well, we spoke to patient engagement experts about the lessons they’ve learned.

Recruiting patients

Who should be a patient advisor? That’s one of the biggest challenges of patient engagement. “You want to make sure that you’re getting people who are broadly representative of the actual make up of your patients and families,” says Williams. That means having representation from people of different cultural and socioeconomic backgrounds.

Maria Judd, senior director of patient engagement and improvement at the Canadian Foundation for Health Care Improvement, says that rather than expecting marginalized patients to respond to recruiting posters, for example, health care staff should ask, “Who are the people we want to hear from and how do we get to them?” she says. Judd recommends organizations look at Beth Snow’s model on engaging marginalized populations. The tool guides health providers through a series of questions to figure out who they should recruit, how and why. The questions include: Are there groups of women or men who do not optimally benefit from your services? Are there community partners who can provide space for engagement?

Another challenge is recruiting both people who are experienced in patient engagement and people who are new to the concept. When HQO was recruiting people to its Patient, Family and Public Advisors Council, the organization made a point of ensuring about half had experience as advisors and half didn’t. Experienced advisors can help to orient and support new people. Those who aren’t “professional patient advisors” (to use Gavin’s term) can have fresh ideas on how to improve services, partly because they’re more likely to have the perspective of what it’s like for patients navigating a hospital department or service for the first time. “It creates this wonderful cycle of knowledge sharing and growth,” says Williams.

A person’s attitude comes into play too. Some people might be too “entirely focussed on their own needs” to see a bigger picture, or are unable to collaborate because they have an adversarial approach – due to an experience of feeling wronged by a health delivery organization, says Gavin. On the other hand, he points out, those who are “cheerleaders” for an organization and aren’t attuned to where improvements are necessary won’t be helpful either.

One way to ensure advisors are the right fit is through interviews. At South Health Campus, those being considered for the Citizen Advisory Team are interviewed for about an hour, says Lori Anderson, senior operating officer of South Health Campus. People are asked about their interests and the areas they’ve seen that could use improvement, and a current patient advisor is one of the interviewers.

Supporting patient advisors

A common error organizations make is not clearly stating the basics. Judd recommends a “one pager” that explains in plain language the expectations for the patient advisor, the goals of the project, and how their input will be used.

Anderson provides an “orientation” for citizen advisors at South Health Campus, where advisors learn about how the hospital is organized, how decisions are made within the hospital, and much more.

During such an orientation, it’s important to explain how decisions are reached. Patients will understand “there are many different inputs to decision making” but feel disillusioned if they’re told they’re going to be directly improving the patient experience, and they don’t see results, explains Abelson. In some cases, it may be necessary to say “we can’t guarantee that what comes out of this will actually become part of our decision,” says Abelson.

Williams also recommends basic training for advisors about their responsibilities. “Patients and families should understand they’re not just there as themselves, but bringing in the patient and family voice of others,” she says.

Morin says patients often feel uncomfortable “speaking for all patients” but she says that’s not the role of advisors – rather, they’re meant to continually encourage decision makers to think from the patient’s perspective. Patient advisors can be provided with questions they should be asking, like “How do you see that process affecting the patient?”

But fielding questions and providing training shouldn’t just happen at the beginning. Williams suggests that advisors be provided with a health professional who can act as a mentor – “someone they can be in touch with if they have questions, someone who follows up with them after the meeting and brings out their voice in the discussion,” she says. Morin adds that advisors may not feel comfortable speaking “right then and there” in a meeting and may need to process the information, so there should be opportunities for patients to share their thoughts in informal ways as well – and for those ideas to be incorporated into decisions.

A seemingly obvious – but financially difficult – way to ensure that patients ideas are championed is to put the resources in place to act on their recommendations. South Health Campus, for example, has “a dedicated Patient and Family Centred Care department” with three people whose role it is to implement changes brought forward by patients, explains Del Castilho. The department reports directly to senior leadership in the Calgary zone.

“One challenge other sites are facing,” says Del Castillo, is that existing staff are expected to implement patient advisors suggestions “off the side of their desks.”

Follow up and evaluation: An often missing piece of the puzzle

After patients have shared their experience or suggestions for improvement, or been involved with a committee, it’s imperative that they hear what comes out of their involvement. “That accountability loop” is something that’s too often overlooked, says Abelson. “Often health professionals get what they want out of the patient engagement process and they’re excited and want to go ahead and move to the next stage,” she says. Reporting back to caregivers and patients can fall to the wayside.

That can mean patients stop sharing their suggestions, says Morin. “If they don’t hear anything about how things have been changed, that can be very disheartening,” she says.

But feedback should happen throughout the process as well. Especially in the early stages of patient engagement, but even now, health professionals can be reluctant to respond to a patient suggestion with “that’s interesting but I don’t think it’s workable,” says Gavin. But explaining  to patients why people in the system can’t implement their suggestion is key to maintaining engagement – as well as exploring other alternative ways of working around a barrier to change.

Compared to follow up with advisors, evaluation of patient engagement projects is done even less. That’s why, in 2011, Abelson led the formation of a collaborative of patient and public engagement researchers and practitioners across the country to develop a tool that could be used by any organization wishing to evaluate their patient/public engagement activities. The tool, which is available as a free download, asks participants to state their level of agreement with 14 statements, including “I understand how the input from this activity will be used” and “A wide range of views on the topic were expressed.” In addition, the tool evaluates impact by surveying the amount of agreement with statements about whether results were shared with senior leadership, or whether leadership used the public and patient engagement input to influence decisions related to health care improvement.

The tool has been piloted in several Canadian provinces and is about to undergo additional feasibility testing in Ontario with seven health system organizations, including the University Health Network and HQO. “The goal was to create something that would be simple to administer, and quick but also we wanted to ensure it would cover all the aspects of what makes good patient engagement,” says Abelson.

As evaluation and accountability makes patient engagement more effective and more integrated into all levels of care, Morin says the benefits will only accrue. After all, she says, patients are always able to see room for improvement.

“A friend of mine was in a hospital meeting and they were talking about their progress on improving C. difficile infections. She said, ‘I know these are good numbers, but my husband died of a hospital-acquired infection so that’s number one for me. That changes how the numbers are interpreted real quick,” she says. “It doesn’t feel like the job is done when you make it personal.”


Additional Resources

HQO provides tips and advice for patients, families and caregivers on how to effectively share their experience, how to start a family council and more. Resources are also available for health care professionals on areas including recruiting patients, establishing roles and structures to incorporate and support patient advisors, and learning from best patient engagement practices in Ontario.

The Canadian Foundation for Health Care Improvement has a searchable database of more than 100 resources on various aspects of patient engagement, including a list of questions to ask potential patient advisors and tips on incorporating patient stories in quality improvement.

Patient engagement is not only being used to improve health care, but health research too. Julia Abelson created a guide for research organizations on the evidence behind involving patients in research, and the best ways to engage.

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  1. Paul W. Gallant, CHE

    Thank you for this excellent article. I would add at least one other factor is important in patient engagement – provider engagement. Simply said, to sustain and have genuine or meaningful engagement aim for collaboration in the longterm. Attaining and sustaining patient engagement can only successfully occur when providers become informed and engaged with patient engagement. Better patient and provider engagement concurrently demonstrates the greatest success and satisfaction, not only in hospitals but broadly in the entire health of communities. At least that’s been my observation in facilitating and advising within acute and primary health initiatives.

  2. Alies Maybee, patient advisor

    Very good article! I have been involved with my hospital, a research funder, HQO, various research teams and Patients Canada as an advisor and found the comments bang on.

    I would add that patients can also contribute to the process of engagement. Sometimes the structure and process of engagement is imposed on us by our partners. “Here are the Terms and Conditions, sign here.” When this happens, it feels less like a collaboration among equals. In the partnerships where I/we have been involved in defining the relationship, there is a greater sense of equal partnership. And many of us come from other sectors and can bring our experiences and tools into our healthcare partnerships.

    I have also found that partnering in research offers up its own hurdles – mostly practical – that are seldom touched on in the literature. As we continue in this relatively new venture, there is still much to be learned.

  3. Wendy Nicklin

    This is an excellent article and nicely outlines what meaningful patient engagement is about. My one pet peeve is that we, those working in healthcare, sometimes continue to come across as patriarchal. Meaningful patient engagement must reflect a true partnership.

  4. Ann Douglas

    The Institute of Families for Child and Youth Mental Health is doing some amazing work in the field of family engagement. They are working to create a “family smart” standard of care that recognizes best practices in child and youth mental health, which includes true family engagement (as opposed to tokenism, which is both off-putting to and disrespectful towards families). I attended their child and youth mental health consensus conference in May 2014 and was totally inspired by the ideas I heard there (like having children, parents, and clinicians all contribute to the session notes that are created at the end of a therapy session). You can find out more here:

  5. Frank Gavin

    I’d like to expand a bit on a point on the point I made about focus groups (a kind of consultation) vs. candid dialogue (essential to collaboration).

    In focus groups participants make suggestions and are sometimes asked to explain or elaborate upon those suggestions but, at least in my experiences, don’t get specific responses. I was once in a focus group where several parents suggested a children’s hospital should have weekend sub-specialty clinics mainly because children wouldn’t have to be taken out of school for a half or a whole day and parents would, in many cases, not have to take time off work. The suggestion was presumably taken somewhere but there was no response. Later as part of a hospital working group that included staff and parents, some parents made the same suggestion and this time within a few weeks a fairly senior hospital administrator came back and explained why, after some consideration the idea wouldn’t fly. (The main reason had to do with the difficulty of having all the appropriate staff–not just doctors and nurses–and trainees on site on the weekend and all the necessary services, e.g. diagnostic imaging, labs, and the people who provide them in place as well.) So there was a specific response that was disappointing but understandable to the parents. But the crucial thing was that the process didn’t stop there but continued with a dialogue about how the problems with the weekday clinics–most especially the sometimes very long times parents and children spent in crowded waiting rooms–could be best tackled.

    Often you can tell that someone is really listening when you get a response that is not the one you want but that, especially in its specificity, confirms that you were heard. In my experience, in the early stages of patient engagement staff and patients can be uncomfortable with responses that aren’t along the lines of “yes, we agree,” but productive engagement over time requires moving past that discomfort.

  6. Carolyn Thomas, HEART SISTERS

    Thanks so much Wendy, Michelle and Debra for this comprehensive overview of such a complex issue.

    I particularly appreciated your real world examples (in Alberta and Ontario) of how listening to patient advisors’ input actually resulted in concrete hospital improvements for the common good.

    But I can also confirm that, as a person who has volunteered through B.C.’s Patient Voices Network and other organizations, being invited to participate as the “patient voice” can too often feel like I’m merely some paid staffer’s tickbox on a ‘To Do’ list to be checked off. (“Did you involve patients in this project?” Check!!)

    These invitations don’t pass the smell test if patient/caregiver volunteers are brought in after the fact when the project seeking this “consultation” is essentially ready to launch.

    I’m also glad you helped to define who the patient voice represents. I too have heard concerns from a number of non-patients that patients can too often be single-issue complainers (sometimes, I suspect that these concerns come from those who long for the good old days when nobody had to even think about including patients in any kind of feedback loop). But as Angela Morin correctly observed in your post, “speaking for ALL patients” is not the role of patient advisors, nor (in my opinion) is it evenly humanly possible.

    When I hear people make sweeping pronouncements on “what patients want…” or “what patients need…”, my spidey senses begin to quiver. Rather, Angela is 100% on the money when she reminds us that our real value as engaged patients is in reminding decision-makers to simply think from the patient’s perspective.

  7. Phil McSweeney (UK)

    Comprehensive article, and rings true with many issues we have in the NHS in the UK. There’s a fair amount of willingness, not enough time, and too little rigour in going about it. Is there a lot of debate about methodology in Canada? Which survey approaches to use? We see to be drifting towards the ‘Tripadvisor’ approach which doesn’t guarantee you are getting views from the right people at all.

  8. Micahel Dennis

    Although I don’t want to sound like I am against more patient engagement in the healthcare system, but in order for patients to be more engaged and in order for this engagement to be fruitful, patient must be first well informed with what they’re being engaged into. I am a family doctor in Alberta, and sometimes patients come to me asking for specific medication to be part of their subscription because they think it’s better for them and that they need it based on wrong ideas by friends/neighbors/family members. It’s the patients’ right to decide what they want to do with their health, that’s a basic human right that I don’t deny, but they have to know that we studied for years and years and when it comes to healthcare and medicine, we might -just might- know better than they do.

    I hope you can understand my tone, I am not being condescending by any means, absolutely, I am just saying that we need to inform the patients with as many facts as possible -which is not an easy process- before engaging them in healthcare decision that would affect their health or the health of their communities.

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