The Minister’s Patient and Family Advisory Council: Discussions from Recent Meetings
In my most recent blog post I offered up an overview and summary of the work the Minister’s Patient and Family Advisory Council has undertaken over the past several months. I’d like to share with you some specifics about our last three meetings and our work to date:
February 2018 Minister’s PFAC Meeting
Our second Minister’s PFAC meeting took place in February 2018. At this meeting we decided to place the emphasis on two goals: a discussion about ‘digital health’ and identifying key topics as part of our forward looking workplan (see previous post for 8 key topics).
We decided to tackle the topic of digital health for a couple of reasons; it was an issue we were interested in as a council, and there was a level of readiness and interest across the Ministry to have a discussion about the many aspects of digital health and to partner with patients in those discussions.
Digital Health
We like to start all of our council meetings with a “What If” perspective. What if we had an integrated system of electronic health records and electronic medical records in Ontario? What if our providers were able to to access our discharge information easily, or share information with other providers across the health care system easily? What if patients had timely and full access to all of their health information electronically? What if patients partnered in referral processes and were able to track a referral and follow up easily?
How can digital health change the health care system for patients, families and caregivers?
We heard from the Chief Clinical Information Officer at the Waterloo Wellington LHIN, who provided an overview of how digital health platforms are being used and how they can transform how patients access and navigate healthcare. Dr. Alarakhia shared how the use of digital health may increase the potential for care coordination and quality improvement:
- Digital health platforms can provide increased access to their health providers with the opportunity for virtual visits with their provider.
- Patients will be provided with more flexibility in accessing health care providers (e.g. opportunity to book a physician appointment on line)
- A glimpse of some of the work that was happening in the Waterloo Wellington LHIN, and across Ontario, including MyChart, The Big White Wall, and others.
We also heard from senior leadership at the Ministry of Health and Long Term Care about their vision and policy work on digital health. There was an important recognition that the Ministry is aware that people want their own information, and that they had placed an emphasis on digital consumer health. They presented the council with the “current state” for how people currently access their healthcare information, and explained digital tools, platforms, and ways that information is being shared in some sections of the healthcare system.
The MPFAC deliberated in both large and small group discussions, as well as in plenary with our invited guests/speakers to share back with policy and program decision makers their view on the work on digital health, and specifically discussed issues related to access, trust, and choice.
Specifically…
The MPFAC emphasized that patients want full access to their health information in a user-friendly digital format, as well as the ability to add information to their own records. Priorities are, in order from highest to lowest: 1) ensuring access to health information; 2) maintaining control over who else has access; and 3) overall security of the information.
The discussion revealed barriers to patients accessing their information (e.g. delays, as well as the burden placed on them to ensure that their health care providers all have consistent, up-to-date information). Having access to personal health information would also help patients ensure that their providers and care team are working off a consistent care plan to avoid gaps during care transitions.
Patients are interested in accessing their hospital-based information through platforms similar to MyChart, and given the breadth of data held by primary care providers, access to primary care information is a key area for further development. The council was also sensitive to the fact that many ‘patient portals’ are being developed by hospitals and healthcare organizations, but that they are not linked to one another, or able to share information. This is an area of keen concern the council and there was specific advice that systemic barriers to sharing/portability and access to health information (patient portals specifically) required leadership provincially.
The MPFAC offered some preliminary ideas for consideration when developing a certification/approval process for digital health applications (e.g. mobile phone apps), including the following areas for consideration: ensuring privacy, vetting organizations affiliated with the app holder to ensure quality, clarifying who is accountable for accuracy and completeness of information, and including a statement of patient values.
April 2018 Minister’s PFAC Meeting
We chose Home and Community Care as a priority topic for our April MPFAC meeting in 2018. We heard from leaders from across the province and within the Ministry on several key issues related to home and community care including: current status, recent progress, and key challenges. We discussed caregiver supports and caregiver burnout, access to services, concerns for the homecare workforce, levels of care required at all stages of life, and the use of self-assessment tools to inform care coordination.
The council discussed the important relationships between providers and the people they serve. Specifically patients/families/caregivers want to work in partnership with their homecare providers, from assessing need to sharing information related to ongoing care/changes in care, or the need for long term homecare support.
Members of the council discussed what a great home and community care system and experience would look like. Some comments were as follows:
- adequately resourced respite for family/caregivers
- provider, front line workers, and care coordinators listening and responding to patient/caregiver issues
- ensuring patient/family/caregiver education, partnership, and offering appropriate tools occurs early and on an ongoing basis (orientation before transitions in care, access to electronic records and tools, patient and caregiver input into the care plan)
- increased staffing and funding of personal support workers (PSWs) in all areas of the province (urban, rural, remote)
- consistency of homecare staff for patient/family/caregiver, and the option for patient/family/caregiver to have choice
- addressing the needs of complex clients, and how needs with respect to homecare may be different and long term — prevention of family/caregiver burnout is key for this population
- ensuring there is the right combination of supports and services available for homecare patients, families, and caregivers.
The council reflected on a presentation by Ministry leadership of policy and program work currently underway that could contribute to improving client and caregiver experience. Of those priorities, they provided advice on how these initiatives might be implemented and opportunities/challenges from the patient/family/caregiver perspective.
- The need for 24 hour access to respite care, and the need to direct resources towards respite and hiring of additional PSWs and nurses.
- Concerns about ‘compassion fatigue’ for family and caregivers, and the important concern of escalating caregiver burnout.
- The need for transitions in care that are better supported (i.e. hospital to home) where good communication with primary care providers, ‘training’ and support for the family/caregiver, access to information and provider support, early access to information about available services, and caregiver relief and care are addressed.
- Patients and caregivers should be aware of the services available to them and care coordinators should be assessing needs (patient and caregiver) more frequently.
- Undertake a patient/caregiver learning opportunity/curriculum for care coordinators to better understand patient and caregivers experiences, knowledge, needs with respect to transitions in care and home care.
The Minister’s PFAC was highly engaged in the conversation and discussion related to home and community care. We are pleased to have a member of the council working directly with the Ministry team responsible for this policy/program area as a patient partner. Home and community care has had strong patient engagement from across the province for a few years in the form of an ongoing advisory council who have provided essential perspective and advice on this important topic.
June 2018 Minister’s PFAC Meeting
Our June 2018 Minister’s PFAC Meeting was held during a time of important transition for our provincial leadership and for the Ministry. During the election period and in absence of a Minister, as a council we decided to focus on Patient Centered Care and what that meant to us as patients, family members and caregivers.
We heard from three different physicians at our meeting who discussed many aspects of healthcare from their perspective, including; current challenges and opportunities, possible new policy directions, the need for an emphasis on kindness and compassion, partnership between providers and patients, equity and respect, and the value of patient partnership and leadership.
As part of that discussion as a council we further explored:
- What we value as patients/family members/caregivers in our interaction with the healthcare system.
- We discussed our approach to equity, our own experiences, and how to ensure diverse experiences are included in our advice.
- Opportunities to extend our leadership as a council.
To that end, we are planning on developing a Minister’s Patient and Family Advisory Council Patient Declaration of Values.
Patient Declaration of Values are required by all hospitals in Ontario and are developed with patients/families/caregivers to define core values and themes that are important to patient-centered care and a positive patient experience. We are now seeing other levels of healthcare develop value declaration statements developed and led by patients/families/caregivers. As a council, we feel they are important touchstones for patient engagement and patient partnership.
I look forward to sharing more about the Patient Declaration of Values of the Minister’s Patient and Family Advisory Council soon, and to continue sharing the work of Minister’s PFAC.
What Else…
There are endless activities and discussions with our Minister’s PFAC and patient advisors across the province.
If you are a patient advisor reading this blog, we’d love for you to become part of the virtual pool of patient advisors that the Ministry is building as an ongoing resource to their policy and program areas: www.ontario.ca/patientengagement.
- A reminder as well that Health Quality Ontario has opened registration as of today for the Health Quality Transformation Conference this October 16th.
I hope if you have something to share based on your health care journey, you find an opportunity to share your experience.
Julie
