Codesigning a patient and public engagement (PPIE) strategy

[A Former User]

I heard today that Rosamund Snow has died. She was patient editor at BMJ and led research that impressed me. She was involved in a Patient and public engagement event with DeepMinds Health which is a Google initiative. I can't get a url for the page I found so I am cutting and pasting most of the text. The second half has interestinng rcommendations

Recommendations on patient and public

involvement and engagement (PPIE) at DeepMind Health

Rosamund Snow

Introduction

I have spent a good number of years being "the patient" in various patient involvement and codesign initiatives, and I've seen both poor and excellent practice. Whilst progress has been
made in that, sometimes, patients now have a seat at the table, very often our contribution can still feel tokenistic and not respected as much as it should be. I know we have a lot more to
contribute, if we are only asked to do so.

The technologies it works on have the
potential to make a big difference to our lives. The launch of DeepMind Health and the subsequent projects that have been announced have been covered widely in the press and received a lot of scrutiny and comment.

I first met Mustafa about four months ago. He has a background in charities and advocacy groups and wanted to bring this experience into how DeepMind Health works with clinicians and
patients. Whilst it was clear from our initial meetings that DeepMind Health has built very strong
relationships with nurses and doctors there was a need for more meaningful input from patients
and carers in projects going forward.

Mustafa set me the challenge of helping define what DeepMind's PPIE strategy should look like.
In doing so, I have drawn on my own experience of the many groups and events I have
contributed to, the shared wisdom of other patients and carers I've worked with in the past, and
the detailed valuable feedback that people sent in following the DeepMind PPIE event in
September. I have also spent many hours observing and interviewing the different ‘specialities'
of people working at DeepMind Health in an attempt to understand how the patient's voice might
have most impact within the organisation.

However, although I hope I've made recommendations that other patients and carers will
welcome and are true to the feedback received so far, I would like to check I'm on the right lines
and see what others think. I have suggested that in early 2017 DeepMind run events, starting
outside London, where people can discuss the detail of these suggestions. Of course, not
everyone will be able to attend these events, but I hope those who cannot attend will contribute
through an online forum that the DeepMind Health team can set up.

In the following few pages I first set out my views on what good and bad PPIE looks like. I then
detail some of my findings from spending time with the DeepMind Health team. Finally, I set out
some recommendations for what an effective PPIE strategy could look like before suggesting
next steps.

What good PPIE looks like

People who are living with a health condition or who have experienced a particular healthcare
situation will have ideas, insight, and expertise that others do not have. They are also the
ultimate users of healthcare systems, so they need to define what ‘good' looks like from that
user perspective. This is why involving service users in healthcare projects is important.
For ease of reading, I will use the word ‘patient' to mean the range of people described above,
although some are carers and some would prefer just to be called human beings who
sometimes interact with healthcare systems this
is a compromise I hope you will forgive.
There is no ideal roadmap for patient involvement, but there are lessons we can learn from
people who are trying to do this in research, education, service delivery and design. The basic
principles are the same as for working with anyone: treat us with respect and value the ways our
input adds to the team's expertise.

Effective involvement projects

● All contributors know what their roles and scope are
● The patients are asked to advise because of specific perspectives, experience,
connections or expertise that is relevant to the project
● The patients' expertise informs the project from the earliest design stage
● The patients have the support they need to discuss ideas equally alongside other
contributors
● The patients are valued equally alongside other contributors (including remuneration)
● All contributors have a chance to make informal or social connections with each other as
well as formal ones

Less effective projects

● Nobody is sure what the patient's role is or what they are allowed to contribute
● Information only flows one way with little or no discussion or codesign
● Patients are treated very differently from other contributors for no good reason; for
example:
○ Patients are asked to "represent" the patient voice, although clinician
contributors are not asked if they are "representative" of all clinicians
○ The patients are the only people on the project who are unpaid, or who cannot
equally join in because of timings, location, use of jargon, or disabilities
○ The scope of the project is mostly or wholly decided before patients are involved
○ A patient is relatively alone, with no chance to have ‘water cooler' conversations
or build up social networks with colleagues, and/or is the only patient involved

What have I learnt at DeepMind Health

After agreeing to work with Mustafa I visited the DeepMind Health team on numerous occasions
to see how the team work together and how decisions are made. I was able to interview senior
staff from the design, product, clinical, research and communications groups. I also had the
opportunity to observe daily ‘design standups',
product meetings and the clinical advisory group.

I got a good sense of the level of enthusiasm and ambition of the team to build products and
services that can positively impact on patients and clinicians. I was able to learn about the
codesign and user testing approach that DeepMind takes and the importance they place on
‘lived experience'. This is very encouraging and a sign of the team's readiness to value patient
expertise and collaborate rather than having a ‘them' and ‘us' mentality.

At the moment, for all of DeepMind's projects, there is extensive clinical input and sign off from full time clinicians, part time clinical advisors and an external clinical advisory group. The DeepMind Health team have a clear focus on their clinician facing platforms (Streams) but they need to avoid doors being closed in terms of design, discussions on who can contribute to data
collection and where pathways begin/end. This reflects prevailing relationships in most healthcare systems, where clinicians expect to decide what information to elicit from patients
rather than patients or carers contributing to those conversations. I would argue that it is never too early to ask for patient input on things that will ultimately affect us.

Key suggestions (for further discussion at consultation events)

The overarching principle behind these suggestions is simply: at every level where clinicians have influence, ensure patients do too.

1. Appoint a Patient Lead with the same level of influence as the Clinical Lead

This role should aim to ensure at the top level that decisions take into account the patient
perspective, and the potential for patient input.

2. Resource an entirely patient led AI project

To date, DeepMind's machine learning research projects have been suggested and designed by
clinicians. An entirely patient led project would be a groundbreaking initiative that would really
illustrate how serious the company is about innovative patient involvement.

3. Appoint Patient Advisors alongside the clinical advisory team for existing projects

Aside from from the Clinical Lead and other full time clinicians, there are clinicians with
specialist expertise on the advisory team which influences all the DeepMind projects. Patients
with relevant experience could offer advice on existing projects, ensuring the scope is not just
defined by doctors and nurses.

4. Create a Patient Panel

DeepMind is currently advised by an Independent Review panel, a number of whom are
clinicians. The role of a patient panel could be to hold DeepMind Health to account from the
patient point of view, help with networking to patient groups and other connections across the
country, and provide ‘critical friend' perspectives. As one contributor to the autumn PPIE event
put it, "you want to have conversations with the people who don't let you get off lightly". It could
work in parallel with the Independent Review panel, or send representative(s) to it.

5. Develop patient testing groups equivalent to clinical testing groups

DeepMind Health has a team of around 50 clinicians who are willing to be called in to advise
and test products in the early stages of development. Although the pool might need to be bigger
than 50 (depending on range of conditions, levels of literacy and experiences DM wishes to
tap), the principle could easily be replicated for patient groups as required.

6. User research and testing on the ground

DM already understand and do this laterstage
testing well; this is simply a question of ensuring
that the definition of ‘user' is wider than just healthcare professionals.

7. Offer research opportunities and internships to patient researchers

DeepMind offers internships, mainly to clinicians. Patients ("service user researchers") will spot
different things to study and could help embed patient involvement and the value of
incorporating patient expertise into DeepMind.

8. And finally...think better about language used

Once most or all of these changes have been made, "clinician led,
patient centred" sounds rather oldfashioned.
Perhaps something more on the lines of "Codesigned by clinicians and patients".

Next steps

1. Contribute thoughts to recommendations through electronic form now
2. Set up independent consultations/focus groups Feb 2017
3. Confirm PPIE strategy and publish on DMH website March 2017
4. Publish accessible guideline on machine learning research to support a patient led project March 2017
5. Appoint patient advisors/lead April 2017

[A Former User]

Annette

Just reading this and I find interesting and certainly a step in the right direction . Have you heard anymore on this Initiative ?

[A Former User]

Thank you Carolyn I will take a look .

Virginia

[A Former User]

Hi Virginia, and welcome to PAN. Here is the website link that Annette was trying to find.

DeepMind Health is a technology private enterprise in the UK that has been attempting to build Artificial Intelligence capacity to help health provider systems and clinicians.

They were acquired by Google and are continuing their technology development and collaboration with healthcare within that corporate context of Big Data. Their primary clients will be in NHS England.

Here is a link to Rosamund and company principals speaking last September at the first public event to launch DeepMind Health. This is probably the easiest way to learn about the enterprise's direction.

Rosamund Snow was just starting out with her attempt to help DeepMind Health succeed in involving patients in a truly productive and authentic way. She felt that there was a very long ways to go, but was willing to help point them in the right direction.

Rosamund's insights and wisdom were wonderful, a great resource for us to use quite apart from DeepMind Health. We are all suffering from her loss but inspired to continue her commitment and passion.

I hope this satisfies your curiosity and helps you explore further with success!

Best regards, Carolyn

[A Former User]

Having spent 15 years caring for a senior and experiencing the health system across many elements: Primary care, Physiotherapy, Mental health, ER Departments, Specialists, Hospitalizations, interactions with CCAC, LTC homes, LTC Family Councils, LHINS, my experiences with most research initiatives have been much less than satisfactory.

When it became clear many of the health system elements were unable to effectively and adequately provide the services, treatments offered, I left my much loved career to care for my much loved dad. I performed the tasks and provided the services the health system's paid government leaders, overseers, managers, employees were supposed to be doing, and were being paid to do. To ensure my dad received the care to which we as taxpayers cover and being present almost daily to ensure quality of his care, I was also able to observe how and where the elements were insufficient and inadequate. Many of the system elements' processes, policies, training, supervision, communications, integration, measurements of quality were either non existent, broken, had large gaps or overlapped.

Most discouraging and unbelievably was the harm and suffering these problems caused patients and their caregivers, and their quality of life. In following the designated channels to provide constructive, balanced feedback, I was always thanked for my caring, assured the problems were being taken seriously, were important and that much money was being invested towards improvements. Over these 15 years I saw no improvements, just heard more promises and assurances the MOH took these matters very seriously.

When opportunities arose to be "engaged in research projects", I was encouraged - finally. However, now after some involvement with these I perceive no real success in patient engagement. Those planning, organizing, managing, leading these engagements really do not YET, fully comprehend the patients',caregivers' perspectives/experiences and certainly not the level of harm, suffering -physically, financially, emotionally being endured. Co-design, equal leading in facilitating, selecting priorities, policy development co-learning/teaching is called for, IF, the system is to be improved to achieve quality, cost effectiveness and sustainability.

[A Former User]

HI Denyse

As a newbie as a patient advisor I already see the challenges. I am in healthcare and do identify the gaps but more now that I have had to become a long term patient. I am grateful that I al least had a back ground when navigating the healthcare system and most definitely agee the patient's perspective needs to be at the fore front.

Your father was fortunate to have you to assist him. I see too many with no one and alone.

I will continue to move forward and hope to learn from PAN members.

[A Former User]

Warm welcome Virginia to PAN and thank you for your comments.... am sure you will discover many PAN colleagues who will support you - the sharing of experiences and learning will give you hope! We have so much to learn from each other.

Many caregivers and patients I know, have told me "we did not realize the consequences of the gaps, barriers on our quality of life, i.e. physically, financially, emotionally until interacting regularly with and across the elements of the health system. Sadly, by the time they make the discovery they are too involved with coping, managing their own health or, that of their loved ones, as well as trying to have a life, they have no energy or time to bring their issues to the attention of the system.

I believe we are all working to remove the barriers, close the gaps and bring awareness of these to those empowered to make improvements. I don't think there is sufficient awareness, of the extent of the consequences patients, caregivers experience, which is why improvements are taking so long. It is hard to change a system that has been geared so long to treating acute health conditions when we really need a system geared to chronic care and caring for an aging population.

Look forward to hearing more about your lived experiences !

[A Former User]

Here's a great paragraph from the patient safety community that has some relevance to our situation and the direction we are headed. It's on page 26 of this report

http://c.ymcdn.com/sites/www.npsf.org/resource/resmgr/LLI/Safety_Is_Personal.pdf

This was barrier #6

6. Absence of nationally representative advocacy groups

A large number of patient advocacy groups exist in the United States, and the
federal commitment to supporting patient advocacy through the Affordable Care Act
promises further expansion of these groups at the state and community levels.35 While
these groups are well intentioned, most are focused on specific diseases, and some
are funded by large medical or pharmaceutical companies that have vested interests
in promoting specific drugs and therapies. Some, such as cancer advocacy organizations,
even compete with each other for funds. Although the diversity of the patient
advocacy movement is in some respects its strength, the lack of a central organization
with unconflicted sources of revenue that can unite like-minded groups in a common
cause for patient safety and quality is a significant limitation. It contributes to
fragmentation of effort and may dilute the leverage potential of a concerted strategy
such as exists in several European nations that favor a more centralized, governmentfunded
approach such as the United Kingdom’s National Voices. The World Health
Organization’s Patients for Patient Safety initiative is an excellent example of an
organizational structure that could be effective in the United States.

[A Former User]

Many thanks Annette for posting this link. I realize more than ever, patients, caregivers must be alert, observant and confident in bringing our knowledge of our condition, our questions, requests for explanations, pros & cons of various procedures, options to the attention of our health providers. This article reveals "we", where ever we live,are having similar experiences, challenges and are NOT alone!

Ultimately, each of us are experts who live "every minute" with our own physical, mental, conditions. When there are variances and we receive treatment we also live every minute with the outcomes, consequences of treatments we receive.

As advocates, caregivers for others, this role is accompanied by a dual responsibility. We may assist/make decisions the outcomes, consequences of which, our loved ones bear. Depending on the relationship with the patient, we, as caregivers are also affected physically, mentally and financially.

Patients, caregivers require skills and knowledge for more focused conversations with our providers. This will facilitate a mutual exchange of expertise and comprehension. Treatment options,potential outcomes/consequences can then be determined by the patient/caregiver who are the ones who will live with them.

Thanks again Annette.