#3Things4Healthcare
As many of you who know me are aware, I love connecting over Twitter. I have found the ‘Twitterverse’ to be one of many great tools to connect with other patient, family, and caregiver advisors and partners. It’s a place to share ideas, to foster connection, to start debate and to trend a topic.
Recently, I asked the people who follow me, and the ‘Tweeps’ (a.k.a. people on Twitter) that follow them, to tell me about their top 3 concerns with healthcare. I wanted to hear about what they would change, why it needs to change, and how they would suggest changing it.
Notice the verb I am using there? “to change” not fix.
Change
/CHānj/
verb
make or become different.
make or become a different substance entirely; transform.
undergo a change, adjust, adapt, improve, redesign, restyle, revamp, rework, remake, remodel, remold, redo, reconstruct, reorganize, reorder, refine, reorient, reorientate
Change can be scary, and for patients, families and caregivers we worry that it will result in extra burden for us to figure out how to navigate the change, how it might affect access to care, communication, and the safety of patients.
There is also opportunity in change, to evolve and land in a space where can can be better. Do better.
As patients, families and caregivers we experience first hand the challenges and barriers of system navigation, care coordination, lack of integrated care, poor communication, limited access to information, burnout and emotional fatigue. We know what is working and what is not working. We live it.
For many of us, our healthcare system is not serving our needs right now and it cannot remain the same. I’ve seen first hand the ‘hallway medicine’ that is impacting our care. I have lived the poor coordination and transitions in care with my young daughter. I have learned from other patients, families, and caregivers that there are very specific needs in their regions and communities that is not served by a ‘one size fits all’ approach.
I know it can be better. Our healthcare system needs to evolve to meet the needs of a changing population in the best interest of all of us.
So my question out to the Twitterverse a couple of weeks ago was:
Patients, families, & caregivers across Ontario are still talking about how WE would improve the healthcare system. What are the top three drivers of changes, solutions, key areas to improve you would suggest ?#3things4healthcare
This is what I heard back, in 280 characters or less:
“1. Integrated solutions to complicated problems system organized (not needing to fight each step of the way) surgery -> GP->paramedical->mental health (not written to make bureaucracy easier
2. Plain language with patient focus (not written to make bureaucracy easier)
3. Partnership rather than paternalism” annafoat, Twitter
“ 1. Rethink food (food-like substances) 2. Rethink Rx medicine (we will not medicate ourselves to health) 3. Rethink health education, beginning in K-12” @kenjaques, Twitter
Even our doctors weighed in:
Cathy Faulds @fauldsca
#3things4healthcare 1. Integrated mental health MSW to primary care 2. Care coordinator nurse in primary care 3. Home care delivery from primary care and hospital 4. Truly integrated EMR push and pull between home care, primary care, pharmacy, mental health and hospital
And what about the role of patient advisors partnering at all levels of the healthcare system,e g. community, regionally, organizations, health system policy? @melissakjones had some things to share:
“Patient-and-family-centred disclosure and opportunity for reconciliation when medical errors occur; patient/family members on hiring committees, especially for senior positions; monetary compensation for patient and family advisors #3things4healthcare”
Digital Health and access to information, as well as more investment in mental health and long term care were also hot topics #3things4healthcare
“Minimum staff requirements per shift in LTC/Hospital settings 2) Care plans that prioritize CARE for the person as a whole not just treatment of one illness 3) Mental Health and Dementia Care Strategies for young and old” #3things4healthcare
#3things4healthcare two points: My family physician opted to pay for a secure email program that works well and I’ve used it. And retirement homes like @ManorVillageCAN have invested in clinical staffing for dementia care (but MoHLTC does not accept as alternative to LTC. Why?) @DrMWeise
I have great respect for Robin McGee. Robin has been through an unbelievable healthcare experience as a person with cancer. If she’s speaking up about #3things4healthcare, we need to listen:
“What would I change #3things3healthcare? Access to records via patient portals, replacement of fax machines with safer communication technology, increased patient engagement in healthcare decsion-making”
There is so much to learn from our patients, families, and caregivers. Their experience, knowledge and expertise are an important contribution to the what we think is known about the healthcare system and what needs to change. #3things4healthcare led to some great input and advice. Here are the key themes that emerged:
- Ability to email providers.
It’s not surprising that this is number 1. Patients, families and caregivers are tired of not having a more direct line of communication with their doctor and with their healthcare team. They want to be able to book appointments online, ask questions of their healthcare team, and have an ability to communicate that offers more flexibility. The practice of using email to communicate happens with some providers and not with others. Organizations and hospitals are inconsistent with their policies. Providers and teams will determine themselves if/when they might use email to communicate leaving patients feeling frustrated and out of the communication ‘loop’.
Patients are also concerned about the ongoing issues of patient safety related to use of faxes. They cannot be copied re: referrals or prescriptions, they worry about lost faxes, and they view the fax machine as outdated and not patient friendly. The fax machine is hardwired into institutional protocol and communication structure, but as the technology becomes more and more archaic we need to disentangle ourselves from relying on it any longer.
Often “privacy” issues are cited as an excuse for lack of email and patients respond by saying “give us the choice”.
Moving along with the technology we have available to us and embracing new forms of communication must be part of a patient partnered model of care.
2. Better integrated care for patients and families
Patients, families, and caregivers are looking for care that is seamless and where they do not fall through the siloed and overly structured cracks of the healthcare system. Patients have become the default system navigators in a fractured healthcare system. There is no ‘one door’, in fact many doors only lead to another door. Phone calls go unanswered or are redirected somewhere else. Patients are not sure who can answer their questions.
Transitions in care often leave patients and families in a place of having to fend for themselves with little to no support, and with no plan in case things do not go well.
Patients have cited specific concerns around complex care and mental health and the lack of integrated and coordinated care that puts them at risk and increases the burden on family and caregivers.
3. Access to health information
All of it. Unfettered, i.e. not within a determined time-frame that hospitals and providers feel is appropriate. This was made very clear by patients and families who responded to #3things4healthcare.
Patients want full access to their EMR and EHR information. Engaged patients want the option to see their information as soon as it is available, and not a time deemed suitable to someone else. Patients and families are seeking full access to both their EMR (in their doctors offices) and EHR (at the hospitals they are cared for).
Patients, families, and caregivers see patient portals as helpful and useful, but they want them to include all the health information that is in their health record. They also want to see ‘full connectivity’ between all healthcare settings, and a preference for a portal that is seamless.
Patients are looking for a fully integrated health record that connects their family doctor, pharmacist, hospital, specialist, and any other healthcare professional they deem important to their circle of care.
There were many other aspects of the healthcare system highlighted as part of #3things4healthcare. I personally founds the responses inspiring. Patients, families and caregivers are engaged and they are becoming more vocal. Their voices are a social movement and it will not be going away anytime soon. They have a lot to say. They are informed and they are engaged. All we need to do is ask
#3things4healthcare
Here are a few more:
The hope for more compassion and empathy, “a true sense of caring” across the healthcare system.
More partnership and less ‘partnernalism’ from providers and healthcare organizations.
A call for more appropriate health human resources, and in particular staffing and under-staffing in long term care.
Improved patient relations process that is transparent and supportive of patient concerns.
Patients as partners on senior leadership hiring committees.
End the practice of “no news is good news”
Consider housing and many other social influences when it comes to the impact on healthcare system and policy.
